Library Thursday : an Interview with Jennifer Graf Groneberg

The author of Road Map to Holland has recently been interviewed by Literary Mama about life with her growing family in rural Montana:

In addition to writing, she home schools all three boys -- the twins are now 6 and Carter is 11 -- and has become a resource and advocate for families with special needs children. In an interview with freelance writer Sarah Werthan Buttenweiser, (Jennifer) Graf Groneberg talks about how and why she wrote her story, what it's like to move from Internet popularity to print publishing and how she juggles motherhood, homeschooling and her creative life........ Read on to catch up with Jennifer Graf Groneberg 6 years along the Road

Road Map to Holland is available for loan to member from the DS NSW library - you can request it by email: library@dsansw.org.au

DS NSW events April - May - June

The last few weeks have been busy with World Down Syndrome Day, adventures, fundraisers and social happenings. For the next few weeks, we'll be busy with information events. Here's a summary of what's coming up. More details and the links you need to register for each are here, or go directly to the flyers linked below:

• Arabic speaking parents of children with Down syndrome - morning tea, Thursday 29th April, 2010 , 10:00am – 12:30pm, Harris Park.
  Phone Lynn or Miriam at DS NSW, on 9841 4401 or Maha on 0408 205 522 to RSVP
  
  
• Behaviour Management - for teachers, Friday 30th April 2010, Rosehill, Ass Prof Keith McVilly
  
• That’s what friends are for, Saturday 1st May 2010, Rosehill, Ass Prof Keith McVilly
  
  Click here for more details and link to brochure and registration form these two events presented by Ass Prof Keith McVilly
  
  Click here to book online for That's what friends are for at Rosehill
  
  
• Starting School - for parents of children with DS starting kindergarten in 2011 or 2012, Saturday 15th May 2010: Parramatta. Download flyer and registration form.
  
  
• That's what friends are for - a workshop for parents and carers of young people with Down syndrome, Saturday, 29th May, Tamworth. Presented by Susan Jones, Step Ahead Consulting. Download flyer and registration form.
  
  
• How can Proloquo2go assist people with Down syndrome to communicate effectively? A parent forum about a communications application for iPhone/iTouch/iPad, Saturday 5th June: Harris Park. Download flyer and registration form.
  
  Details for events for grandparents and for teachers later in June are to be confirmed.

Centre for Disability Studies

The Centre for Disability Studies (previously the Centre for Developmental Disability Studies) is an academic unit of the University of Sydney. The Centre has recently undergone some changes, including the appointment of its new Director, Prof Patricia O'Brien, following the retirement of the founding Director, Prof Trevor Parmenter.

The website has been considerably re-vamped and upgraded,and includes better access to and information about the NSW Developmental Disability Health Unit (a specialist consultative medical service for people with developmental disabilities) - accessed from the Clinical Services tab.

Well worth a bookmark.

Grace App - another communication option

Grace App is another option for using picture communication on an iPhone, iTouch or iPad. developed by the mother of an autistic child. It is available from iTunes. Click here to read a report press report.

Supported Living Fund for NSW

The discussion paper, A Supported Living Fund for NSW, is an initiative of Family Advocacy - you can download the document here.

Down Syndrome NSW has discussed supported living arrangements with many members over many years, individually and in group settings, and has presented the views of families to government at every opportunity. While a very welcome increase in funding for supported accommodation has materialised in the last 3 - 4 years, families remain frustrated that mechanisms to allows people with disabilities and their families to have more control over and input into supporting them to live away from the family home has not been developed.

This discussion paper raises most of those issues and proposes a solution that is in line with what many families would welcome. Its release is timed to maximise interest in the lead-up to the State election, and follows recent publicity of the no-win situations that families have found themselves in when they can and wish to contribute to their son or daughter's long term support outside of the existing ADHC controlled system of supported accommodation.

It is important to note the distinction that this document, and other Family Advocacy initiatives draw between "supported accommodation" and "supported living" .... it's a lot more than semantics.
And to note that this concept is separate from (although related to) concurrent campaigns for Self Directed Funding, and the campaign for a National Disability Insurance Scheme.

A wedding video ....

Some people have suggested that this wedding video should come with a tissue warning. Tiffany's mother sums up the couple's loving relationship as "better together than either on their own". The video speaks for itself.

(Thanks to Stuart Mills at DSA in London for the link)

Shorten the white knight for no-fault disability insurance

The campaign for a National Disability Insurance Scheme continues to draw attention in the media.

In today's Fairfax press, columnist Adele Horin surveys the role of Parliamentary Secretary for Disabilities, Bill Shorten in putting disability-related issues firmly on the national agenda.

..... Whatever the motive, Shorten has turned a backwater cause into a politically prominent issue ..... Click here to read the column.

CHW School Link: mental health, children and adolescents with intellectual disability

School-Link is a project of the Children's Hospital, Westmead (in Sydney), supporting the mental health of children and adolescents with an intellectual disability by focussing on training and informing the wide range of professionals who might work with them and their families.

The first CHW School-Link Newsletter has just been released, and is available online here.

You can also sign up to an e-list that will mainly be used to circulate future issues of the Newsletter.

Hands Can Talk - new website

Hands Can Talk, the sign language and communication consultancy run by Aileen Ryan has a bright, colourful new website, with information about how sign can be implemented for people with communication difficulties whether their hearing is impaired or not, resources, and workshops all over NSW and interstate.

Free ABA apps from iTunes for April

To mark Autism Awareness Month, iTunes is offering 26 ABA flash card applications, each with 50 - 60 photographs, for free download until the end of April.

The apps are for iPhone and iTouch - we hear that they are beautifully clear photographs, many with no backgrounds. Click here for more information and links to the downloads.

The producers list these features:

- Clear, Colorful, Concrete Images
- Benefits to both Visual and Auditory Learners
- Classical Music with Visual Reinforcement
- Sound can be turned "on" or "off"
- Flash Cards can be shown in order or shuffled
- Concisely Pronounced Audio

Library Thursdays: Riverbend Down Syndrome Support Group and Down Syndrome Centre Ireland

We often mention the Down's Syndrome Association (UK) and Down Syndrome Education International (DownsEd), and the Down Syndrome NSW site (of course) but there are many other excellent websites on Down syndrome. The Riverbend Down Syndrome Parent Support Group website is one of these. It is based in Illinois in the US and collects together a wide range of articles and abstracts of interest. The latest article added was Algebra and Problem Solving in Down Syndrome: a study with 15 teenagers by Elisabetta Monari Martinez (published in European Journal of Special Education 25(1), 13-29, 2010). But the topics of articles range from ones about early intervention, music, sports, inclusion, to medical articles, homeschooling, therapies, links and more. Not all the articles are mainstream, universally accepted research (although most are) so it allows a wide range of views to be discussed.

Another interesting website is the Down Syndrome Centre, a website from Ireland with a collection of blog entries from staff, an advisory panel and community members as well as useful articles. These range from advice on toilet training, classroom tips, to how a son learned to drive. The website has a nice positive feel.

There are many more and we'll point them out in future blogs. Let us know if you have a favourite and why.

Productivity Commission Inquiry: National Disability Long Term Care and Support Scheme

From the National Disability Insurance Scheme campaign:

The Productivity Commission ran advertisements in major newspapers across the country today announcing the beginning of its inquiry into a National Disability Long Term Care and Support Scheme.

In case you missed the ads, they read as follows:

The Productivity Commission invites public participation in an inquiry into a Long Term Essential Care and Support Scheme including:

• how it would need to be designed to make a practical difference to people with disability, their families and carers


• its costs, benefits and feasibility


• its interaction with the health, aged care, informal care, income support and injury insurance systems


• how to determine the people most in need of services, the services they should receive and service delivery


• its workforce and infrastructure impacts.
  

To register your interest in the inquiry or obtain the full terms of reference, please contact Roberta Bausch on 02 6240 3221 or email disability-support@pc.gov.au or go to www.pc.gov.au/projects/inquiry/disability-support

The Commission also sent out its first circular with information about the consultation process. If you did not receive it, it can be downloaded at the website above.

We strongly encourage everyone to register their interest so that they can follow the progress of the inquiry and be notified of opportunities for participation – you will only get regular updates from the Commission if you register your interest.

This is your chance to have your say about what the future of people with a disability, their families and carers looks like in this country – and it is an opportunity not to be missed.

iDevices, applications - a great leap forward

Aileen Ryan from Hands Can Talk is very excited about the potential of the Apple iPad to improve on the already impressive performance of the iTouch as a communication device that can change the lives of people with disabilities who have difficulty making themselves understood with speech or sign. Her thoughts, focussing on Proloquo2Go are in this recent blog post.

The Toronto Globe and Mail reports similar thoughts from teachers and parents of children with special needs.

Proloquo2Go for the iPad

And this blog lists many applications that are either low cost or free that people with disabilities have found useful.

Scroll down to Saturday 5th June on this web page for information about a parent forum on using Proloquo2Go with people with Down syndrome, to be held by Down Syndrome NSW.

"Glee" character Becky Jackson to return in new season

Disability Scoop has published an interview with actor Lauren Potter about her role as Becky Jackson in two episodes of season 2 of the TV series Glee. The first season aired here in Australia on the TEN Network, in 2009.

• Earlier entry about Glee and Lauren Potter

Healthier Lives in Western Sydney: forum

A forum on strategies for improving the health of people with intellectual disabilities in Western Sydney, presented by NSW Council on Intellectual Disability and Western Sydney Intellectual Disability Support Group



Tuesday 22nd June, 2010
9 am - 3 pm


Max Webber Library
BLACKTOWN



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

Free for people with intellectual disability
$10 family member/students
$55 service providers
(all including lunch)

Speakers

• Dr Bob Davies, Director, Centre for Developmental Disability Health Victoria
• Dr Helen Somerville, Adult Disability Clinic, Westmead Hospital
• Christine Regan and Maria Heaton (parents)
• Jann Capizzi , Clinical Nurse Consultant, Westmead Hospital
• Chris Atkins, Clinical Nurse Consultant
• Dr Leda Mugayar, Westmead Centre for Oral Health
  Jim Simpson, Senior Advocate, NSW CID

Contact NSW CID or WSIDSG for registration information.

Living Our Visions

Centre for Disability Studies with Pathways to Leadership Limited

Invite you to learn about Living our visions (LOV)

• How can we find the “good life” for our loved ones with disabilities?
• Everyone wants to be valued members of a community with employment, recreation and meaningful relationships.
• As family members, we have been isolated in pursuit of this vision- so began LOV- Dane. Two years ago a group of families from across Dane County began meeting to share our common issues and think about what we could do collectively. Mike Green, an expert in Asset Based Community Development, has supported us to develop a strong sense of community through focused relationship building. Now, with a strong family network in place, LOV is acting together to solve our common problems.
  

Pathways to Leadership Limited links formal and informal networks of people with a disability, their families, and allies across Australia and internationally via training and leadership opportunities.

Presenters Amanda Bell & Stefanie Primm

Tuesday 20th April 2010

10 am – 2.30 pm (Tea & coffee available from 9.30am)

No fee …. just bring something to share for lunch

Todman Hall, Royal Rehabilitation Centre Sydney, 59 Charles Street, Ryde

RSVP: (02) 8878 0500 or email m.carrick@med.syd.edu.au

What is LOV-Dane? www.youtube.com/watch?v=87YIPY7MRTo

Download a flyer here

Remembering Baby Doe

As we wrap up our World Down Syndrome Day events, here is a very sobering reminder of why Down Syndrome International, and other advocacy organisations are actively engaged in outreach programs with a focus on the developing world, and that complacency in the developed world is a present danger.

US lawyer Mark Leach remembers Baby Doe, and the many children with Down syndrome who might never get to celebrate their own births, let alone World Down Syndrome Day. Thanks to Patricia Bauer for the link.

The Big Scrapheap Adventure Report

17 riders made it to Wanaaring by Easter Saturday for the inaugural Scrapheap Adventure Ride 2010. Most successfully rode their ‘Scrapheaps’ (bikes which cost them less than $1000, but countless hours of searching for parts, assembly and reassembly, tinkering and more tinkering – true labours of love and perseverance). Accompanied by support crews of family and friends, around 30 people in all descended on this remote outpost, raising the town’s population (136 at last census) for the night by around 20% (that's the equivalent of just over a million extra people visiting Sydney on one day!).

Main Street, Wanaaring

Camping out at Wanaaring Pub

They came from all directions. Trevor rode down from Townsville (over 1500km). David L and Julian rode up from Melbourne. David P discovered the joys of ‘slow touring’, riding up from Sydney on a recently purchased 1980 Yamaha XT250, the same age as Down Syndrome NSW - a fitting tribute for our 30th anniversary year.

Breakfast, Wanaaring Pub, Easter Sunday morning

Alf rode in on his beloved ‘Voodoo Child’ (definitely no ‘chook chaser’) purchased from Glen Innes motorcycles in 1992, accompanied by Ned on the ‘ruggedly handsome’ Damien. Joe made it up from Vacy (over 900km) on his 1985 BMW, but left the ‘scare chair’ at home (to the relief of many).

Traffic - Bourke to Wanaaring Road

12 year old Liam rode the farm trails on his Honda XL with the support of his pop Graham - the only thing he smashed was his initial fundraising target of $100. Liam will have a few good yarns to tell back at school.

Graham and Liam

Andy and Team CT rode up from Cowra and got the whole town (including the Mayor) behind them. Meanwhile Matty drove more than 1200km from Port Lincoln in South Australia to lend his support, enthusiasm and good humour.

Floodwaters between Bourke and Wanaaring

A few were stymied by the motorcycling gods, and despite best endeavours ended up having to leave their scrapheaps at home and ride their more ‘sophisticated’ machines. They nevertheless made a mammoth effort, and they were very welcome at the Wanaaring Hotel.

Trevor, Bill and David, Wanaaring Pub

A number of adventurers took the ‘scenic route’, going the long way round via White Cliffs. Others like DS NSW member Rod braved the flood waters and took the direct route (a mere 950 km from Sydney) on his newly acquired ‘postie’, with his wonderful support crew, Fiona and Cassie, and made many new friends (and sponsors) along the way. The Kelly family have raised around $7500 to date, an amazing effort. (Read about their Adventure here).

It was not the motorcycling gods but the extravagance of Huey that almost stopped Down Syndrome NSW CEO, Steve Clarke and his family. They also took the direct route (by 2-wheel drive), and got to within 5 miles of the Wanaaring Hotel just before nightfall before seeing the dirt track in front of them disappear into a miniature lake. With no mobile coverage and not a single other vehicle sighted in the 3 hour drive along the 200km stretch from Bourke it looked like it was going to be a long night.

The Paroo River in flood at Wanaaring

Then after about 10 minutes, a distant rumbling of an engine could be heard, followed a short time later by local Susie in her 4 wheel drive. Susie’s vehicle was already packed but she kindly gave our stranded CEO a few extra bottles of water and promised to get an SOS to the Scrapheapers already assembled at the Pub, before driving on through the lake. Within about 20 minutes, Rod appeared on the other side of the floodwaters and led Steve out of the wilderness, around the flood waters on an unmarked detour.

Meanwhile, at the Wanaaring Hotel celebrations had long been underway. It seemed the whole town (note pop. above) had gathered to mingle and swap tales with the Adventurers. The hospitality of publicans Moc and Sheree was enjoyed by all. They had kindly donated some mouth-watering local produce to raffle and auction off. Bidding was fierce for the sumptuous hamper of local port, honey and other treats but congratulations go to Michael of Startrack Express (and brother-in-law of aforementioned Susie) for making the generous winning bid of $200. The next day is was universally agreed by locals and visitors alike to have been ‘a big night’.

Perry (Pezz), Rod, Joe and Steve ... at the Wanaaring Pub

All proceeds of course go to Down Syndrome NSW for support, services and programs for people with Down syndrome and their families. Congratulations and thanks to all our Adventurers and their crews who have now raised close to $20,000, and a huge thank you of course to DS NSW member Pezz, father of the beautiful Gracie, for turning what seemed like a crazy idea at the time (and still does to most of us) into a reality!

To congratulate our Adventurers and help them hit their collective target of $20,000 go to http://www.scrapheapadventure.com.au

A much more concise report from Alf on Voodoo Child…

‘The Dark Train rolled into Wanaaring in perfect tune, no dirt road, bulldust, *** or high water was going to stop us. We may not have raised the most money, but for a couple of country boys we were pretty sharp. The only road bikes amongst a convoy of chook chasers, we flew the scrapheap flag with pride and our arrival back home was so much sweeter........."THANK YOU" to all of our sponsors, everyone who helped in some way, and all of our well wishers, we done youse all proud!’ Alf (Congratulations Alf for raising over $1000 to date, pretty sharp indeed.)

Heading home ......

What an Adventure!

Siblings ...... just brothers and sisters

Thin Places is a blog written by a theology student who happens to have a child with Down syndrome. The blog is not principally about Down syndrome, although it comes up from time to time. This recent post about siblings is a nice reflection on the relationship between two small children.

More photographs from human rights exhibition online

All of the Human Rights in Britain Today photographic exhibition is now online, including more portraits of Down2Earth members. (See the first three in this post from a few days ago)

• Joseph
• Karen
• Kaya
• James
• Janine
  
  

Creating the life you want - workshop

Jeff Strully presents

Creating the life you want
People with disability, families and services working together.

9.30am - 2.30pm,Tuesday 4 May 2010
Epping

The workshop will be highly relevant for families (including adult brothers, sisters and extended family), allies and those who work with people with disability.

• Contact Family Advocacy for further information and to register (by 27th April)
  Phone: 02 9869 0866 Free call: 1800 620 588 (NSW non-metro callers)
  Email: workshops@family-advocacy.com
  www.family-advocacy.com
  

Meet the Shadow Minister - put your questions

As campaigning begins for both State and Federal elections, opportunities are being created to learn what priority each party gives to issues concerning people with disabilities and their carers, and just what thier policy positions are.

The Sunnyfield Auxiliary is providing an opportunity for families and anyone interested to ask the NSW Shadow Minister for Disability Andrew Constance what his party intends to do for people with a disability:

Saturday 17 April 2010
Sunnyfield Chatswood Industries
O'Brien St., Chatswood

Starting at 2.30 pm finishing by 5.00 pm

The State-managed interests of people supported by Sunnyfield are likely to centre around aspects of the provision for long term accommodations and supported living, self-directed funding, aged care, future planning, the long term roles of families, and responsiveness of services and government.

Library Thursdays: Articles in other association journals/newsletters

The latest issues of The Down's Syndrome Association (UK) Journal, Down Syndrome Ireland magazine, Down Syndrome Association of Queensland Digest and The (German) Deutsches Down-Syndrom Infocenter's Leben Mit Down-Syndrom are all in the library. The following articles appear in these magazines. Let us know if you would like a copy of any of them.

DSA UK Journal Spring/Summer 2010

Healthy lifestyles & fitness- because you are worth it!!! by Joan Murphy (looks at causes of obesity, how to overcome it and

Alfie's home education programme (article about finding the right support and education for a boy with Down syndrome and autism.

Down's Syndrome toileting questionnaire by June Rogers (results of a survey to determine what kind of toileting problems families were experiencing)

Self-talk findings: recent findings on self-talk behaviour in people with Down's syndrome

(the complete report is accessible online at http://www.down-syndrome.org/reports/2063)

DSAQ Digest Autumn 2010 (March-May)

Types of Touch (article based on "Rules of Touch" by Family Planning Queensland)

Education: Laptops in Schools by Angie Keegan (pros and cons of a student with Down syndrome using a laptop in school)

Feet & Down syndrome by Darren Stewart, Podiatrist

Visual Acuity by Kerry Lawson

When Love Conquers All (story of a married couple who both have Down syndrome and how they manage their life together)

Down Syndrome Ireland magazine Spring 2010

How to Become a Self Traveller by Joan Paterson (about how a young man became independent at using public transport.)

The Social Lives of Teenagers with Down Syndrome by Grainne O'Malley (article looking at results of research into the social lives of Irish adolescents with Down syndrome)

Sex Education and improving capacity of people with intellectual disability to make sexuality-related decisions by Eileen Dukes

Leben mit Down-Syndrom Jan 2010

Various articles in German that we have not translated but they include:

Standhafte Kinder by Ute Jacobs (about stances and orthotics)

Zur neuropsychologie des abstrakten Denkens unter den Bedingungen einer Trisomie 21 by Andre Frank Zimpel

Jolina hatte Leukamie by Sandra Hegermann (about a girl's battle with Leukemia)

If you are interested in any of the articles above, let us know or come in and browse these and other newsletters from the various associations.
To borrow anything else just email or call.

Human Rights in Britain today - photographic exhibition online

Photographer Nadia Bettega worked with more than 60 individuals and groups to create the Changing the Face of Human Rights exhibition.

(The exhibition) is supported by is supported by the British Institute of Human Rights (BIHR) and it gives participants the opportunity to define how they and their community are represented and to explain the importance of human rights to their lives.

Changing the Face of Human Rights is at HOST Gallery, in London, 7-14 April.

These three people who are members of the London-based DSA group Down2Earth are featured in the online gallery of portraits from the exhibition hosted by the Guardian newspaper:

• Krystyna
• Thomas
• Teresa

"This Way Up"

Annabel is an English mother of three active boys, one of whom, Freddie, has Down syndrome. She is a website developer, and has used that expertise to set up a website and blog to relate to other families. The site has some great photos, and it is interesting to follow a family's life in the northern hemisphere, as the seasons dictate some very different activities from those we are indulging in at any time.


Click here to visit This Way Up

The Scrapheap Adventurers did it - they got to Wanaaring on Easter Saturday

The road was long, a bit wet and muddy here and there, and even closed in some places, but the intrepid Scrapheap Adventurers pushed on, and made it to Wanaaring, undeterred by floods and distance, 200 km past Bourke on Easter Saturday - and they had a ball!

Rod Kelly did 1,155 km on his reconstructed postie bike, and is the first in with photos:

Team Kelly (Rod, Cassie and Fiona) all packed up and ready to roll .....

Are you lookin' at me? Flat out burning up the road at 80 km/hr

The Outback Hilton .....

...came with all mod cons. Was Rod looking for Steve on an online GPS?

Well and truly in the Outback now.

Long straight road, big, big sky ......

A slight obstacle!

Made it!

And look who else was in outback NSW this Easter!

Rod is within a whisker of reaching his very ambitious fund-raising target of $7,500 - any takers? HIs own blog, a few more photos, and fund-raising page is here.

The inaugural Scrapheap Adventure has been a wonderful, fun, hard working way to raise awareness and funds for the work of Down Syndrome NSW with people with Down syndrome and their families - we thank Perry Gilsenan who dreamed it up, every rider, support team member, every donor, everyone who welcomed the adventurers along the way, the people of Wanaaring and far western NSW.

You can still support this wonderful adventure via the riders' fundraising pages:

www.scrapheapadventure.com.au

New live online advice services: DownsEd

Building on the success and popularity of recently developed online services, Down Syndrome Education International has announced a new live online consultation service, available to a worldwide audience, commencing in May. Sessions will cover a range of topics within age bands from early childhood to teenage years.

Dates, topics and details are available here. Numbers participating in each session will be limited, so early booking is advisable.

These sessions are in addition to the DSEI programs of online seminars on development topics and on research (a free series).

Library Thursdays: Protective behaviour resources

It's not always easy to know what to say to children to help them learn to be safe without causing anxiety, alarm or even confusion. Picking up warning cues or even thinking that other people may have bad intentions may not come naturally to children with Down syndrome. Our library has a few resources to help with this.

Everyone's got a bottom (by Tess Rowley, illustrated by Jodi Edwards, Family Planning Queensland, 2007) is a good book to teach about private parts and beginning learning about protective behaviours. There is a couple of pages in the back for parents with strategies.

Teaching children with Down syndrome about their bodies, boundaries and sexuality (by Terri Couwenhoven, Woodbine House, 2007) is useful for parents and teachers of young children right up to adults. It covers body awareness, private/public concepts, puberty, social skills, relationships and sexuality. There are teaching materials as well. It is a great book and recommended for all parents.

Another resource is Relationships: Going round in circles (by Lorna Davin, Family Planning NSW, 1991), a small booklet which describes the Circle Concept to explain degrees of intimacy in different relationships.

Also available is Responding positively to sexual behaviours: The Traffic Lights Model (Family Planning Queensland, 2007). It is a DVD, CD and factsheet for teachers and professionals to "Identify, Access and Respond to sexual behaviours that may cause concern in school settings".

Another teacher resource is Developing personal safety skills in children with disabilities (by Freda Briggs, Jessica Kingsley Publishers, 1995) which has modules covering Self-esteem, Assertiveness, Coping with hazards, Bodies, Private parts, Feelings, Touching.

And there are a couple of resources by Dave Hingsburger on reducing the risk of sexual abuse of people with developmental disabilities: Just Say Know!(Diverse City Press, 1995) and The Whole Truth(Diverse City Press, 2008), a DVD and book abuse prevention training program developed with people(adults) with intellectual disabilities to help them recognise and report boundary transgressions.

A resource on the web created by people with intellectual disabilities in the UK, which is not quite as confronting is the Stay Safe Rap by Roaring Mouse Drama Group and Shoot Your Mouth Off Productions. It is quite good although it does have the UK 999 emergency number which would have to be explained.

If you would like to borrow any of these or anything else from the library, just email us or call.

Wordless Wednesday

We're Mad as Hell

In preparation for the Federal election scheduled for later this year, and a NSW State election in March 2011, the Mad as Hell campaign has been launched to focus attention on the unmet needs of people with disabilities and their carers, and to encourage voters to actively look for policies that will support people with disabilities. Visit the website to read about the campaign and to take the We're Mad as Hell pledge.

Arabic speaking parents and carers of children with Down syndrome

- you are invited to an information morning. Our librarian will be available to assist you in choosing appropriate resources from our library.

Enjoy an opportunity to meet with other parents and share experiences and information

Thursday 29th April, 2010
10:00am – 12:30pm

At our new DS NSW Seminar Room
80 Weston Street, Harris Park

Morning tea will be provided, but if you would like to bring morning tea to share it would be appreciated! (Please no peanut products)

Young children are welcome but must be supervised at all times by the parent.

If you wish to attend or require further information, please

• phone Lynn or Miriam at DS NSW, on 9841 4401
• or Maha on 0408 205 522

That's what friends are for ..... supporting young people with Down syndrome to make and keep friends

- a workshop for parents and carers

Saturday, 29th May: Tamworth

9.30 am - 3.30 pm
Best Western Sanctuary Inn, Tamworth, NSW

presented by Susan Jones, Step Ahead Consulting

Flyer and registration form can be downloaded from here

• or contact Siena at DS NSW: ph. 02 9841 4411 or workshops@dsansw.org.au

Preliminary memory training study underway: DownsEd

Down Syndrome Education International has embarked on the evaluation of a computer-based memory training program. Collaborating with researchers at the University of York, UK, and the Down Syndrome Research Group at the University of Arizona, USA, we are conducting a preliminary evaluation of the programme with children with Down syndrome in preparation for a larger trial. ...... Read more here at DSEI News, 30/3/2010

DownsEd In Touch also reports the very positive feedback from the first free online research seminar held last week - some of our staff participated and found it very worthwhile. Future dates and AEST sessions are here.

Our society will be worse off if we reject Down syndrome children

Chris Meney, director of the Catholic Archdiocese of Sydney's Life, Marriage and Family Centre, has written an opinion piece published by today's Sydney Morning Herald:

We like to think we care deeply about those who suffer. We like to believe we are willing to do whatever we can to help those burdened by intellectual or physical disability. It seems to resonate with the way we believe we ought to act towards our fellow human beings.

But there are indications our society is moving towards avoiding having to associate or engage with the disabled, particularly the intellectually impaired.

The situation of the disappearing Down syndrome babies in Australia in the past few decades is a case in point. Of about 300 pregnancy terminations in NSW every year due to detected birth defects, 77 per cent are associated with a chromosomal abnormality. The most common is Down syndrome. Read on for the entire column.

The online publication has drawn wide ranging comments.

Edit 31/03/2010: And replies in the letters column yesterday and today also pose different view - click here and here.

Research project begins for the provision of therapy services in rural and remote NSW

Media Release from the Minister for Disability Services, 10 March 2010

The NSW Minister for Disability Services Paul Lynch today welcomed the start of a major research project into the provision of therapy services in rural and remote NSW.

Mr Lynch said the four year project, a joint enterprise between Ageing Disability and Home Care (ADHC) and the University of Sydney would focus on the effectiveness of the delivery of psychology and therapy services to people with disabilities living in rural and remote NSW.

“The project will be managed by Professor Craig Veitch of Community Based Health Care at Sydney University and ADHC’s Western Region Director, Scott Griffiths and his staff,” Mr Lynch said.

“The project will focus on three areas of therapy provided by ADHC in the Western Region - speech, occupational and physiotherapy, and psychology.

“The researchers will cooperate with clinicians who are working with people with disabilities in the Western Region.

“Given the lack of research in this particular area, there is little doubt the project will provide a new set of information will assist in the formulation of policy, future education of psychology and therapy students, as well as how they will deliver services in rural and remote communities,” he said.

The Dean of the Faculty of Health Sciences at the University of Sydney, Professor Gwynnyth Llewellyn, said the project is vital to the ongoing development of services for people with disabilities.

Professor Llewellyn launched the project on Wednesday 10 March 2010 at Ageing, Disability and Home Care Regional Office,Dubbo

Scrapheap Adventure 2010 - the T shirt!

Next weekend, the inaugural Scrapheap Adventure will make its mark on the NSW calendar.
Scrapheap Adventure Ride Touring Shirts now on sale - great mementos of this unique event. Click here to purchase your shirt.

www.scrapheapadventure.com.au

Substitute decision making for people lacking legal capacity

From i:D, March 2010 .... the bulletin of the Disability Council of NSW

The NSW Parliament’s Standing Committee on Social Issues has published its report on the Parliamentary Inquiry into “Substitute decision-making for people lacking capacity”. The report is available in PDF at the Committee’s web site.

The Report makes the following general observations (which are broadly consistent with the Disability Council’s submission to the Inquiry):

“Any provisions for substitute decision-making must strike a delicate balance between two competing duties of government towards people with disabilities – to respect and maximise their autonomy while at the same time protecting them from abuse. The manner in which these competing duties have been weighed throughout history reflects the dominant paradigm of the era in relation to the treatment of people with disabilities.”

“The current paradigm, which emphasis principles such as the presumption of capacity, the principle of least restriction and the promotion of assisted decision-making – as opposed to substitute decision-making – is largely enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The way in which the UNCRPD can inform and be incorporated into NSW legislation formed one of the major themes of this report.”

The Committee makes 35 Recommendations including the following matters:

• Introducing a legal definition of capacity;
• Creating a presumption of capacity;
• Support for assisted decision-making;
• Further recognition of the concept of ‘best interest’;
• Reviews of Guardianship automatically triggered by evidence of re-gained capacity;
• Automatic review of Financial Management Orders;
• Consideration of legislation to enshrine least restriction in practice;
• Assisted decision-making powers for the Public Guardian to allow it to assist people not under Guardianship;
• Creation of an Office of the Public Advocate;
• An inquiry into end of life decision-making.

For further information" www.disabilitycouncil.nsw.gov.au

Library Thursdays: Resources in languages other than English

In multicultural Australia, there is a need for resources in various languages. The library has a wide variety of resources in languages other than English. Resources in Arabic, Chinese and Vietnamese are the most plentiful as they are the most commonly non-English languages used in NSW. They can be accessed here.

In addition we have limited resources in Japanese, Korean, Finnish, Hindi, Urdu, German, Dari, and others. We also have a range of journals from other countries.

Contact if you have a need for information in a language other than English and we will try to provide you with information.

Down Syndrome Education International also has some resources in Spanish and Norwegian and are keen to work with other organisations to provide more translations.

MDAA (Multicultural Disability Advocacy Association) also provides some resources on disability in general in various languages.

If you are interested in borrowing any of the non-English materials or would like to borrow anything else, just email or phone.

World Down Syndrome Day in the media

Calls for more understanding on World Down Syndrome Day

Jacob Short and Ji Butler are like most other teenage boys.

They spend endless afternoons on the Playstation, competing against each other in Wii Sports and love hitting the bowling alley or having a game of bocce.

They just have something extra which makes them a little different - an extra chromosome.

Both boys have Down syndrome and their folks think its a blessing and a privilege to parent such spirited sons ..... Read the entire article from the Blacktown Advocate here.

People with Down syndrome ...... could unlock mysteries of aging

USA Today spoke with several leading researchers, specialist medical professionals and families for their survey of how biological differences discovered in people with Down syndrome are shedding light on a number of health problems that occur amongst all people. The report includes some delightful photos of a 59 year old woman with Down syndrome.

As they live longer, adults with Down syndrome — who have an extra copy of chromosome 21 — are teaching scientists about the genetic roots of aging, says Ira Lott, head of pediatric neurology at the University of California-Irvine School of Medicine.

Scientists today are searching this chromosome, which contains only about 200 of the body's roughly 20,000 genes, to learn why people with Down syndrome suffer disproportionately from some health problems, such as Alzheimer's disease, but are spared many others, such as heart attacks, strokes and certain types of cancer.

By studying adults with Down syndrome, researchers hope to find new ways to combat diseases of aging in the larger population as well, Lott says.

"It's an interesting detective story," says Lott, head of the science advisory board of the National Down Syndrome Society. "People with Down syndrome are unique when it comes to many aspects of aging."

.....

Reeves says he's grateful to the Down syndrome community for teaching scientists so much.

"If it weren't for people with Down syndrome having fewer tumors," Reeves says, "we never would have thought to look for anything like this."

To read the entire article and to see the photos, click here.

Dural dad takes on the Scrapheap Challenge

Go the Kelly family! The Hills Shire Times tells the story .....

The Kelly family of Dural will be spending Easter on a big red dirt road heading west of Bourke.

For 14-year-old Cassie and her mum Fiona it will be a fairly comfortable ride in the Landcruiser while Cassie’s dad Rod will doing it tough on an old postie’s bike.

Read on for more, and a picture of the bike.

• Sponsor Rod Kelly here.
• More information on the event, other participants, and registrations - click here
  

Dance Like Nobody’s Watching - the DVD

If you missed the screening last night of this new documentary about living with Down syndrome in 21st century Australia, or if you just want your own copy, you can purchase it on DVD from:

Down Syndrome New SOuth Wales: call 02 9841 4444, or email library@dsansw.org.au

or from

G.A.P. Media: http://gapmedia.com.au

DS NSW members can borrow a copy from our library.

Your local library might be interested in adding it to its collection - just ask the librarians.

More alike than different .... US campaign video

The National Down Syndrome Congress, a US national organisation's campaign, "We're More Alike than Different" now features an online video showcasing some aspects of the lives of four adults with Down syndrome - see it here. Good viewing around World Down Syndrome Day!

World Down Syndrome Day: what's on, where and when

Celebrating the lives of people with Down syndrome all over the world.

More World Down Syndrome Day events around NSW


Vintage by the Sea - Shabby Chic Market
Sunday 21st March, Cronulla, 9am – 4pm
Cronulla Masonic Hall
43 The Kingsway, Cronulla
Inquiries: Robyn 0425 243 520

Penrith - World Down Syndrome Day Afternoon Tea 4 '321'
Sunday 21st March, 2pm
Church of Christ, 156 Stafford St, Penrith
All welcome – but please rsvp for catering (call Siena on 042 5207 916)

Narrabri: World DS Day Lakeside Picnic and Games

Cheer on ‘TEAM MOG’ in the Tuff Truck Challenge 2010
27th - 29th March: Hunter Valley
Attempting a top ten finish, raising funds for Down syndrome
nr Milbrodale in the Hunter Valley
Support Team Mog by clicking here or go to www.tufftruck.com.au for details of how to attend .

2nd - 4th April: Wanaaring
An adventurous outback World Down Syndrome Day event…
Cheer our 'Scrapheap Adventurers' as struggle to get to Wanaaring (200km back of Bourke) before the Easter bunny on their machines resurrected from the scrapheap.
Follow their journeys on ther blogs and give them your support at the Scrapheap website www.scrapheapadventure.com.au
Bike or no bike... everyone's welcome at the Wanaaring Pub on Saturday 3rd of April to celebrate World Down Syndrome Day in unique style...

Sunday 18th April: Five Dock
World Down Syndrome Day Morning Tea 4 '321'
All Hallows Catholic Church
Halley St Five dock
After the 10am Mass (approx 11am)
Special Guest: The Mayor, Angelo Tsirekas

Dance Like Nobody's watching - interview with director, ABC radio 702 Friday 19th, 10.30

Deb Cameron will be talking to Liz Collins, the director of the new film Dance Like Nobody's Watching, looking at living with Down syndrome in 21st century Australia .... through the eyes of Paul Matley, who has Down syndrome.

10.30 am, Friday 19th March, ABC radio 702

The film is screening at Cremorne on Monday 22nd March, to mark World Down Syndrome Day. Details and booking options are here

Library Thursdays: Making a Case for Life: A New Definition of Perfection

New to the library this week is a slim book, Making a Case for Life: A New Definition of Perfection, written by Stephanie Wincik, a nurse in the U.S., who has worked for many years with individuals with intellectual disabilities. She was prompted to write this book when she discovered that 80-90% of fetuses diagnosed with Down syndrome are aborted. She is not against abortion per se but feels that each case should be made after receiving clear and unbiased information and she believes that that information is not being received. So she wrote this book addressing the standard myths and arguments against having a child with Down syndrome. She also includes an interview with a young woman with Down syndrome, Bridget Brown, who has set up an advocacy group, Butterflies for Change. She also interviews Bridget's mother about having a child with Down syndrome. Lastly she discusses what people with Down syndrome bring to the world and why it is important that society does not condemn them as imperfect and unworthy of life. Wincik proposes that in these times, society could use the traits of people with Down syndrome and that we need to create a new definition of perfection. She further illustrates this with the inclusion of Dennis McGuire's excellent article "If People with Down Syndrome Ruled the World".

Wincik is clearly passionate about the topic. Her arguments are sound and will be of no surprise to families of people with Down syndrome. The fact that her connection with people with Down syndrome is as a professional helps to balance the zealousness of the book. Presumably the target audience is those with a pre-natal diagnosis or the medical profession. Both may better access this over the internet but as part of a pre-natal pack it may be useful. Another use would be to give to extended family members who have trouble accepting a child with Down syndrome and the decision of the parents. I enjoyed the essay at the end about the need for diversity in the world and rethinking perfection. And I enjoyed re-reading McGuire's article in this context. I think the interview section in the middle was fine but maybe more voices would have added to the book. It is nice to see this type of book and I hope that it raises awareness with some and gets people thinking.

If you'd like to borrow this book or any other from the library, just email.

Stephanie Wincik's website

Another look at selecting the perfect baby

Celebrating World Down Syndrome Day

Penny Green in the UK has written a thoughtful post about Celebrating World Down Syndrome Day, (Sunday 21st March) highlighting three important things she has learned.

And remember our screening of Dance Like Nobody's Watching on Monday 22nd is one of our celebratory events - there are some tickets available still. Click here for information.

And some great news for The Enchanted Forest Black Tie Ball on 27th March - WES CARR will perform LIVE & UNPLUGGED - a unique opportunity to meet Wes Carr and see him perform a rare live, intimate acoustic set.

Enchanted Forest details here

Modified touch football at Baulkham Hills

Norwest Rugby is considering developing a modified touch program, for boys and girls with special needs, aged from under 6 to 19 yrs old.

The rules are not finalised and there is an opportunity for parental input. Parents would be required to remain on site, to provide adequate supervision.

For information phone Mike Cox, from Norwest Rugby on 0415 230 524

World Down Syndrome Day: by the lake, in Narrabri

Narrabri will celebrate T4321 for World Down Syndrome Day at the Narrabri Lake on Sunday 21-3

If you would like to share in this special day please just come. We love to share fun times.

We will meet from 11.30 for a BBQ and catch up. Bring your own lunch eg sausages, bread, drinks and perhaps a salad or slice to share and a chair for between games.

We have a set of boules but are looking for a set of quoits for games and a basket ball so we can maybe shoot a few hoops at the new court.

If it is wet we could adjourn to the Wilga.

Phone Marion on 6792 3420 or just turn up

Images from our archives (2)

The Summer 1998 - 1999 issue of the Down Syndrome NSW Newsletter had this sunny photo of Lucy Dumitrescu on the cover - it was taken to illustrate a children's book of colours, and was chosen as the cover photo for it too.

And as it happens, this summer, Lucy was again featured in a cover photo, this time for the TAD Journal, January 2010 (the cover story is on p.4), published by Technical Aid for the Disabled, NSW. The accompanying cover story is about Lucy's bike, adapted by the Freedom Wheels program, allowing her to enjoy cycling independently, and to participate in triathlons!

• Some of Lucy's other sporting achievements have been featured here and here.

Latest quarterly publications from Down Syndrome NSW

From the March 2010, Down Syndrome NSW and Down Syndrome Victoria are publishing, in collaboration, Voice, a quarterly journal, into which each State will place its own supplement.



The online edition of the Down Syndrome NSW News supplement, March 2010 is available online here, including links to the Voice March 2010 feature articles.

Members will have received their quarterly mailout in the last few days, including Voice, March 2010, and the March 2010 issue of the monthly listing of events, Down Syndrome NSW Update. The online edition of the March 2010 Update is here.