DS NSW e-Update, May 2010

The online edition of our monthly information and events bulletin, Down Syndrome NSW e-Update, May 2010 is now available here.

You can subscribe to email delivery using the link in the masthead.

Inquiry into planning options and services for people ageing with a disability

This Senate committee is investing:

Access to planning options and services for people with a disability to ensure their continued quality of life as they and their carers age, and to identify any inadequacies in the choice and funding of planning options currently available to people ageing with a disability and their carers.

The Committee is seeking written submissions from interested individuals and organisations preferably sent electronically by email to community.affairs.sen@aph.gov.au  as an attached PDF or Word format document.The email must include full postal address and contact details.

Alternatively, written submissions may be sent to:

Committee Secretary

Senate Community Affairs References Committee

PO Box 6100
Parliament House
Canberra ACT 2600

Closing date for the receipt of submissions is 28 May 2010.

Terms of reference and further information is available from the Inquiry's web page.

Down Syndrome NSW is compiling a submission, and welcomes members' input - please contact Kathi Beck, library@dsansw.org.au  or phone 9841 4410 on Tuesdays or Thursday (or leave a voicemail at other times). Individual submissions are, of course, encouraged.

Library Thursdays: Exercise and physical activity

At the World Down Syndrome Congress last year, Nora Shields spoke about the need for physical activity and how it is more difficult for people with Down syndrome to move due to low muscle tone and other factors. Lack of activity has an impact on health, work possibilities and quality of life so activities need to be found that are enjoyable and not difficult. We have a few resources in the library that could be helpful.

Down syndrome: Play, move and grow by Anne Jobling & Naznin Virji-Babul (DSRF, Burnaby, Canada, 2004) looks at each age group and how motor development progresses and can be encouraged. It is a bit clinically but there is much good information and research.

Gross motor skills in Children with Down syndrome by Pat Winders (Woodbine House, 1997) is a classic for motor development activities in the early years. And Motor Skills Development for individuals with Down Syndrome by Ben Sacks & Sue Buckley provides the usual great research and information from Down Syndrome Education International.

Yoga for the Special Child: a therapeutic approach for infants and children with Down syndrome, cerebral palsy, learning disabilities by Sonia Sumar (Special Yoga Publications, 1998) gives an easy to follow program for parents and professionals.

Yoga and children with Down syndrome- shows the introduction to a DVD on yoga done with people with Down syndrome.

Links to sports activities can be found in this blog as we become aware of them as well as on our website.

If you'd like to borrow any of the resources or anything else from the library, just email or phone us.

Respite Guidelines and New Directions in Respite Services: new from ADHC

Two new publications related to respite care services have been released by (NSW Human Services) Ageing, Disability and Home Care:

Respite program guidelines (disability) - Operated and funded services under the disability services program

About the respite program guidelines

The Respite program guidelines (disability) (the guidelines) provide the framework for respite service delivery for Ageing, Disability and Home Care, Department of Human Services (ADHC) operated and funded disability respite services. The guidelines have been developed by ADHC to support ADHC and non-government providers in delivering respite services in NSW. These guidelines will also be used by ADHC staff involved in the performance monitoring and reporting of respite services.

These guidelines provide an outline of respite services, the role of respite services within the disability service environment and the principles and values that should guide service delivery. They provide information about ADHC’s expectations for the provision of respite services by ADHC Regional and funded providers, while also enabling providers to deliver services in ways that respond to the needs of respite users and local conditions. The guidelines reflect the NSW Government’s commitment under Stronger Together: A new direction for disability services in NSW: 2006-2016 to expand existing respite services and build a more flexible and responsive disability respite service system.

These guidelines are not intended to provide detailed operational guidance but should be considered within the existing policy framework as set out in the funding agreement and the description of funded service or the service description schedule.

Copies of these guidelines and the documents referred to in the guidelines may be obtained from ADHC’s website at www.adhc.nsw.gov.au

Content
About the respite program guidelines
Services these guidelines apply to
Updating the guidelines and feedback from service providers
Overview of respite
Responding to a growing need for respite
Principles
Eligibility and priority of access
Service types
Funding
Operational service requirements
Service monitoring
Legislation and policy
Working in partnership
 

New directions for disability respite services in NSW  is a report on consultations about respite services in NSW, conducted during 2009.

From the introduction:

The (paper) New directions for disability respite services in NSW has been developed to assist in the reform and expansion of disability respite services.

It will guide the way future disability respite services are delivered, how people access those services, the types of services provided, the settings in which they are delivered and the development of new respite services across the sector.

.... Ageing, Disability and Home Care (ADHC) has consulted with a wide range of stakeholders and reviewed national and international research along with key research conducted locally by Interchange NSW and Carers NSW.

..... In all, more than 30 consultation forums were held across the state where families and carers told us what types of respite services they need, how they would like respite services to be delivered and the times at which they need respite support. Respite service providers and advocates suggested ways in which the respite service system could be improved to ultimately deliver the best possible respite support for their clients. In addition to the forums more than 50 separate written submissions were received from people with a disability, their families and carers, advocates and service providers.

Revision of the National Standards for Disability Services

From April 2010, people will be able to participate in consultations to support a revision of the National Standards for Disability Services (National Standards). The consultation is open until July 2010.

Focus Groups
For further information on focus groups and workshops in NSW, please contact Sonia Davda, Policy Officer, Ageing, Disability and Home Care on (02) 8270 2093 or by email at sonia.davda@dadhc.nsw.gov.au

Online Survey
From 21 April 2010, people wishing to complete an online survey can go to
http://www.dhs.vic.gov.au/disability/improving_supports/national-quality-framework/online-survey-for-the-national-standards

Written Submission
From 20 April 2010, people wishing to write a submission can find the template at
http://www.dhs.vic.gov.au/disability/improving_supports/national-quality-framework/written-submission-for-the-national-standards

Telephone feedback
From 22 April 2010, people wishing to give telephone feedback can call the NSW Fair Trading Information Centre on 1300 528 937.

Source, and further information:
Revision of the National Standards for Disability Services,  Bulletin #3 – March 2010, posted on the AHDC website.

Entertainment Book 2010 - 2011 is now available

BUY A BOOK TO BUY A BOOK - you can support the DS NSW library by buying the Entertainment Book 2010 - 2011.

The Entertainment Book is a restaurant and activity guide that provides special 25-50% discounts and 2-for-1 incentives from many of the best restaurants, hotels and attractions. It represents great value for family entertainment. The featured restaurants and other businesses do not pay to be included, they are selected based on awards, reviews and personal recommendations. See the Entertainment Book web site for more information.

You can order localised editions, including North Sydney, The Hills/Parramatta, Canberra, Central Coast/Newcastle/The Hunter, and there are interstate and even New Zealand editions that would make great gifts.

• Click here to download the Entertainment Book 2010-2011 order form for Sydney and North Sydney
• Click here to download the Entertainment Book 2010 - 2011 order form for Parramatta and the Hills

 or contact Angela Adams at the DS NSW office on (02) 9841 4409 or email admin@dsansw.org .au for an application form.

 

Thank you for your support - enjoy your Entertainment Book's benefits.

 

Young man with DS in University of Utah Valley program

Reed Hahne is a young man making his way in the world, making the most of opportunities that were almost unthinkable a generation ago, and remain unusual - while school systems still wrestle with supporting students appropriately, post-secondary education is beginning to open up.  Here is the University of Utah Valley's Student Success Story on Reed.

Nutrition researchers to develop new growth charts for children with Down syndrome

The Children's Hospital of Philadelphia (affectionately known as "CHOP") runs a well known and highly regarded Trisomy 21 Program. Such specialist programs take on clinical, education and research roles. Here is news of a current research project that will directly benefit the health care of children with Down syndrome, at a very practical level:

Parents and doctors have known for a long time that children with Down syndrome tend to grow more slowly and are considerably shorter than most other children. But pediatricians needing to record growth milestones at regular office visits have an outdated set of growth charts based on data collected more than 25 years ago. Since that time, there have been major advances in the medical care of children with Down syndrome. In addition, the demographics of the general U.S. population have changed, and children are taller, but also more overweight.

Now researchers at The Children's Hospital of Philadelphia will be measuring children with Down syndrome from birth to age 21 to develop updated growth charts. A four-year, $1.2 million grant from the Centers for Disease Control and Prevention (CDC) is supporting this effort, which brings together experts from the Hospital in growth and nutrition, Down syndrome (also called trisomy 21), and general pediatrics.

Read on for the full text of Eureka's news report about this work (22/4/2010)

The study will produce valuable new clinical tools, but it will also be interesting to see the changes in growth patterns over the 25 years between data collections.

New thinking about molecular genetics and Trisomy 21

An Ohio State University study published in March highlights the complexity of the effects of increased “gene dosage” that comes with Trisomy 21 . The researchers observed that a protein, MeCP2, involved in gene functions that influence cognition is reduced in brain tissue from people with Down syndrome. They then demonstrated that the levels of MeCP2 could be increased in the brains of mouse-models of Down syndrome, by injecting an experimental drug. The relative importance of MeCP2 in cognitive impairment in Down syndrome is not yet clear, although it is known to play a role in Rett’s syndrome.

The broader concepts of gene-protein product pathways acting in paradoxical ways is not really new, but the demonstration that increased gene dosage is not necessarily a simple linear effect in Trisomy 21 is significant for understanding that it is unlikely that there will be a simple “solution” to the anomalies that Trisomy 21 causes, even in isolated aspects of its multiple impacts. Even when we know what the genes involved are and what effects they have, the biological pathways are complex.

The online science news service Eureka reported the research and the interesting background to how the protein was linked to Trisomy 21 here.

Citation
Donald E. Kuhn, Gerard J. Nuovo, Alvin V. Terry Jr., Mickey M. Martin‡, Geraldine E. Malana, Sarah E. Sansom, Adam P. Pleister, Wayne D. Beck, Elizabeth Head, David S. Feldman and Terry S. Elton, Chromosome 21-derived MicroRNAs Provide an Etiological Basis for Aberrant Protein Expression in Human Down Syndrome Brains J. Biol. Chem. 2010 285: 1529-1543.

The abstract is available online from the journal's website.

DS NSW Mothers' Weekend 2010

18th - 20th June 2010
Treetops Resort, Avoca Beach

$245 per person, twin share

This event is open to Down Syndrome NSW members only.

Register by 30th May 2010

Enquiries: Lynn or Judy at Down Syndrome NSW 9841 4401 or support@dsansw.org.au

Click here for a flyer and registration form for Mothers' Weekend 2010

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.