Friday, 30 April 2010
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.
PO Box 6100
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, email@example.com or phone 9841 4410 on Tuesdays or Thursday (or leave a voicemail at other times). Individual submissions are, of course, encouraged.
Wednesday, 28 April 2010
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 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.
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.
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
Eligibility and priority of access
Operational service requirements
Legislation and policy
Working in partnership
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.
..... 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.
Tuesday, 27 April 2010
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 firstname.lastname@example.org
From 21 April 2010, people wishing to complete an online survey can go to
From 20 April 2010, people wishing to write a submission can find the template at
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.
Monday, 26 April 2010
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.
- 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
Sunday, 25 April 2010
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.
Saturday, 24 April 2010
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.
Friday, 23 April 2010
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.
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.
Thursday, 22 April 2010
Treetops Resort, Avoca Beach
$245 per person, twin share
This event is open to Down Syndrome NSW members only.
Click here for a flyer and registration form for Mothers' Weekend 2010
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
Wednesday, 21 April 2010
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.
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.
Monday, 19 April 2010
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.
Sunday, 18 April 2010
(Thanks to Stuart Mills at DSA in London for the link)
Saturday, 17 April 2010
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.
Friday, 16 April 2010
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.
Thursday, 15 April 2010
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
Wednesday, 14 April 2010
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.
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.
And this blog lists many applications that are either low cost or free that people with disabilities have found useful.
Tuesday, 13 April 2010
Tuesday 22nd June, 2010
9 am - 3 pm
Max Webber Library
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)
- 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.
Monday, 12 April 2010
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 email@example.com
What is LOV-Dane? www.youtube.com/watch?v=87YIPY7MRTo
Download a flyer here
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.
Sunday, 11 April 2010
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.
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.
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’.
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.)
Friday, 9 April 2010
Jeff Strully presents
Creating the life you want
People with disability, families and services working together.
9.30am - 2.30pm,Tuesday 4 May 2010
The workshop will be highly relevant for families (including adult brothers, sisters and extended family), allies and those who work with people with disability.
Thursday, 8 April 2010
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.
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.
Wednesday, 7 April 2010
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:
Click here to visit This Way Up
Tuesday, 6 April 2010
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 .....
The Outback Hilton .....
...came with all mod cons. Was Rod looking for Steve on an online GPS?
Dates, topics and details are available here. Numbers participating in each session will be limited, so early booking is advisable.