The Scene is The Spastic Centre's free fortnightly e-newsletter.
It features news, events, issues, links and contacts for people living with cerebral palsy, their families and service providers.
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Justin’s Story
Sixteen-year-old Justin White was asked to write what he would like to tell people about cerebral palsy.
“Cerebral palsy is a physical condition that can affect things like speech and movement, but no matter what the type or the severity, it does not affect our emotions ... Our ability to laugh, cry or get angry!”
Read more of Justin’s insightful response and his determination to reach his goals in Justin's Story.
Parents (and Grandparents)
Seminar on Tips to Help You Promote Your Child’s Interests
12 September 2006
All interested parents/carers of children with disabilities are invited to hear the key speaker from Family Advocacy discuss advocacy and negotiation, to get the best results for you and your child in dealing with systems such as the education system. This morning event is organised by the Carers Support Services of Northern and South Western Sydney Health and councils of City of Ryde and City of Canada Bay.
The workshop will be held at The Lodge Conference Room, Corner Badajoz and Twin Roads, North Ryde from 10am to 12 noon on 12 September 2006. Morning tea provided. For further information and to reserve a place contact Helen on 02 8877 5108.
[Source: Warringah Disability Information Service]
Grandparents Raising Grandchildren
Anecdotal reports suggest that there are quite a few older people in NSW raising a grandchild with cerebral palsy – particularly in rural areas. A new Raising Grandchildren website will offer support to all grandparents who find themselves unexpectedly responsible for their grandchildren. The website is hosted by the NSW Council on the Ageing (COTA) and offers useful information, handy hints, stories and local groups for grandparents. Find it at www.raisinggrandchildren.com.au
In mid 2007, COTA will host a National Summit on Grandparents Raising Grandchildren across Australia. See the Events page on the website for more details.
Research
Independent Evidence
How do you know if one health care treatment works better than another, or if it will do more harm than good? These are just some of the questions that The Cochrane Library will help answer. The Cochrane Library brings together in one place, research on the effectiveness of healthcare treatments and interventions. It is recognised as a unique source of reliable and up-to-date information on the effects of interventions in health care.
The Cochrane Library incorporates not only hundreds of medical conditions but also diverse topics such as injury prevention, alternative remedies, and natural treatments. Its primary feature is the Cochrane Database of Systematic Reviews (Cochrane Reviews), which investigate the effects of interventions for prevention, treatment and rehabilitation. If there is no Cochrane Review on your specific topic, the other databases in The Cochrane Library will provide information on other quality reviews and randomised trials.
New users can check out a good range of user guides linked from the home page. It's worth typing "cerebral palsy" into the search field to see the reviews on the topic.
Why is Evidence Important?
Only one in two patients in the health system receive the care they should, based on the evidence. One in ten patients receive care that isn't recommended and which is potentially harmful. The ABC radio’s Health Report next Monday 11 September takes a close look at the catastrophic errors that have occurred when evidence has been ignored. You can listen to the report on Radio National at 8.30am or 8pm, and the report will also be available later as an audio cast on the ABC website at www.abc.net.au/rn/healthreport/
Service Providers
Disability support services 2004-05: national data on services provided under the CSTDA
'Disability support services 2004-05' reports on data collected as part of the Commonwealth State/Territory Disability Agreement National Minimum Data Set (CSTDA NMDS) between 1 July 2004 and 30 June 2005. The NMDS provides information on the service outlets funded under the CSTDA and the people who use these services. The report includes a strong focus on data relating to the support needs, informal carers and living arrangements of people who access CSTDA-funded services. For the first time, some comparisons between two full financial years of CSTDA data (2003-04 and 2004-05) are included.
View the media release or download the full report.
Life expectancy and disability in Australia 1988 to 2003
Life expectancy has increased markedly over the last century. Has the number of years lived with illness or disability fallen or risen as overall life expectancy has lengthened? This report explores this question, focusing on years lived with disability. The report updates previous estimates of 'health expectancies' in Australia and examines the changes over a period of 15 years, from 1988 to 2003.
View the media release about this new report at or download the full report.
SuperTalker
SuperTalker
SuperTalker is an
easy to use
speech-generating
device (SGD)
designed with
flexibility in
mind. Not many SGDs have the
flexibility that SuperTalker offers especially at a price below $1000.
If you're an educator after a flexible classroom resource or a clinician looking for a handy assessment tool, then SuperTalker could be the device you're after. SuperTalker can be setup into two, four or eight message area configurations and comes with eight levels of high quality recording capacity. Choose from two models with or without switch accessibility.
For more information on SuperTalker visit the website of Technability, a division of The Spastic Centre www.technability.com.au
Conferences .. Workshops .. Forums (Service Providers)
Promoting to and Networking with Ethnic Communities
16 November 2006
This hands-on workshop focuses on the why, who and how of making connections, building bridges and developing reciprocal and lasting relationships with ethnic communities. There are no assessments or pre-requisites for the course.
The workshop will be held at Northcott, 1 Fennell Street, North Parramatta from 9am to 5pm on 16 November 2006. The cost is $110 for Non government organisation and $220 for government. For further information contact the Multicultural Disability Advocacy Association of NSW on 9891 6400 or visit www.mdaa.org.au.
The Right to the Right Health Care - National Conference
15-17 November 2006
The theme of this important annual conference is ‘Evidence, Ethics and Health in People with Developmental Disability’. Organised by the Centre for Developmental Disability Studies (CDDS) and Australian Association of Developmental Disability Medicine (AADDM), keynote speakers include Prof Eric Emerson (UK), Prof Hans Reinders (Netherlands), Dr Andre Blanchet (USA).
The conference will be held at the Sydney Masonic Conference Centre, 66 Goulburn Street, Sydney, from 15 to 17 November 2006. Registration fees: non-member $594 / $660, member $550 / $616, fulltime student $495, day registration $275.
For further information contact CDDS on 02 8878 0500 or email cdds@med.usyd.edu.au
or visit the Conference page on the CDDS website.
For Sale
Tempo 16” BMX Tricycle.
Step through frame, saddle seat with adjustable backrest, waist strap, quick adjustable handlebars and seating (good for growth and/or multiple users). ‘T’ dual steering system, (can be steered by handle and/or used for pushing up hills etc), adjustable foot straps, back step. Also comes with foldable bike rack for transportation. Will suit child 4-9 approx. of average height. Excellent therapy aid. Selling as child has outgrown bike.
Good condition. Cost $2,200.00 when purchased.
Will sell for $1,200. For more information please contact Dianne (in Singleton area of NSW) on 0419 436 201, or email evansco@hunterlink.net.au
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What would you like to see in "The Scene"? Email Robyn Cummins Information Manager at The Spastic Centre if you would like to contribute any ideas, advise of any future events or know of any websites that might be of interest to others.
Disclaimer
Opinions expressed in items of The Scene are the individual opinions of the respective authors and do not necessarily represent the opinions of The Spastic Centre or the editors. Products and companies featured in The Scene are not necessarily endorsed by The Spastic Centre. The Scene is intended to be informative only and should not be relied on as medical or other technical advice on any matter. The Spastic Centre and editor take no responsibility for the information published in this newsletter or any person's actions in reliance on that information.
