The Scene

Issue 4, 21 April 2008

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Feature

‘Helping You and Your Family’ and ‘Through the Maze’
The Association for Children with a Disability NSW (ACD NSW) is a non-profit registered charity, run by parents who seek to help other families in situations similar to their own. They have developed two publications to help guide families with a child or young adult with a disability through the maze of information. The books will be launched by the Hon. Kristina Keneally MP on Wednesday 30 April 2008.

The pocketsize publication, Helping You and Your Family, was designed for families with a child who is newly diagnosed with a disability. It deals with the issues that will face the family at that early stage, focusing on emotional and relationship issues, with a brief overview of the service system.

The larger publication, Through the Maze, is a comprehensive guide to disability services in NSW for families, parents and carers. It covers the stages from diagnosis of a disability through to adulthood. It is a guide to the services available and a key to understanding the way the service system works but also provides information on advocating for your child and the financial and legal options available to support your child.

Both books are written by parents of children with a disability, so are full of handy hints and coping mechanisms.

An electronic copy of the books will be made available on the ACD NSW website www.acdnsw.org.au after the launch and printed copies are available by contacting Katrina Clark on 02 9416 1725 or by email at khenty@optusnet.com.au

Awards

National Disability Awards 2008 – Nominations open
If you know someone who has made a significant contribution to the disability community - either at a local, regional, state or national level - nominate them for the National Disability Awards in 2008.

There are five award categories:
- Community Contribution Award - Person with disability who has made a significant contribution to their community (no age limit)
- Young Community Contribution Award - Young person with disability who has made a significant contribution to their community (aged between 12 and 25 years)
- Inclusion Award - Person who has made a significant contribution to improving the lives of people with disability (no age limit)
- Go Getter Award - Young person who has made a significant contribution to improving the lives of people with disability (aged between 12 and 25 years)
- Personal Achievement Award - Person, either with disability or caring for someone with disability, who has overcome adversity to achieve personal goals.

For more information, and to download the nomination forms, go to www.idpwd.com.au/awards.asp

CP Treatment

The Safety of Botulinum Toxin
The American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) has placed a number of links on its website relating to the use of botulinum toxin for the treatment of people with cerebral palsy. The links include the Food and Drug Administration’s (FDA’s) response to the recent media releases about a small number of patients with cerebral palsy who experienced several severe complications, including death after receiving botulinum toxin injections.

AACPM states…

‘The FDA did not provide details on these deaths and also stated that, “posting the information does not mean that FDA has concluded that there is a causal relationship between the drug products and the emerging safety issue”. We applaud the FDA for notifying physicians that there have been complications and we are awaiting specifics on what the complications were and if there were any common characteristics of the patients which might help us to avoid complications in the future. They are not recommending that physicians discontinue use of the drug at this time. We support the FDA investigation and agree with the need to be sure that patients and physicians are fully informed of the current investigations, and eventually the outcomes of these investigations. We will be very vigilant in following the science behind this communication and will keep you informed about any new data that is given to us.’

View the page at www.aacpdm.org/index?service=page/fda_announcement

 

Research - Participants Needed

Alternative Accommodation for Younger People Living in Nursing Homes
More than 6,700 younger people with disabilities are living in Australian nursing homes. This is predicted to increase as carers, especially older ones, are no longer able to provide the level of care required at home. The University of Sydney is undertaking a study to explore the experiences of younger people with disabilities in nursing homes, their carers and nursing home staff. By listening to younger people and their carers, the study aims is to help develop alternative models of accommodation for younger people with high level care needs.

If you are interested in participating in the study, phone Natalie Berg on 02 4733 3249 or email nber5765@mail.usyd.edu.au

[ Source: communityNet]

Graduate Enployment

Stepping Into…..
The Australian Employers Network on Disability has opened its 'Stepping into...' series for final year university students with a disability. The program is designed provide students with a disability with paid and practical work experience before they enter the workforce. More than 20 organisations participate in the program, including Merrill Lynch, Westpac, ANZ, Qantas, Telstra, Australian Taxation Office and KPMG Australia.

The various programs include:
- 'Stepping into Law': for students in the fourth or fifth year of a law degree (or second or third year of a graduate law degree) with places offered in Sydney and Melbourne.
- 'Stepping into Banking': for students in the final two years of an accounting, economics, finance or commerce degree, with places offered in Sydney and Melbourne.
- 'Stepping into Accounting': for students in the final two years of a degree with an accounting major or equivalent with places offered in Sydney, Melbourne and Brisbane.
- 'Stepping into Information Technology': for students in the final two years of an information technology degree with places offered in Sydney and Canberra.
- 'Stepping into the Department of Defence': for students in the final two years of an accounting, finance, law, information technology or human resources degree with places offered in Canberra.

Most of the internships last for four weeks. Applications close on Friday 23 May, except for the Department of Defence program, which closes on Monday 31 March 2008.

For more information, visit the Employers Network on Disability website.

Health

Transition Care Website
www.health.nsw.gov.au/gmct/transition/index.html

NSW Health’s Greater Metropolitan Clinical Taskforce (GMCT) has set up the Transition Program that aims to improve continuity of care for young people with chronic health as they move from children's (paediatric) to adult health services. The Transition Care program is currently developing a range of general tools to help young people, their parents and their health care professionals prepare for transition. These include: factsheets, checklists, assessment for readiness forms and reference lists.

For more information, phone Program Manager Lynne Brodie on 9887 5578 or email lbrodie@nsccahs.health.nsw.gov.au

Conferences.. Workshops.. Forums..

National Disability Services (NDS) NSW 2008 State Conference Papers
Papers presented at the 2008 NDS NSW 2008 State Conference in February are now available to download. The conference provided the disability services sector with a better picture of how organisations and government are utilizing budget enhancements and ‘Making it Happen’ for people with disability. Fifty speakers met with delegates over two days, highlighting new and innovative service delivery examples, trends and issues.

Download the papers from www.nds.org.au/nsw/2008conference.htm

Caring for the Carer Seminar, and Sibling Workshop
The Association of Genetic Support of Australasia (AGSA) is holding a seminar for carers of people with additional needs. Speakers from regional services will cover topics like early intervention, the school system, local services and support, disability advocacy, and the personal experiences of other carers. The day will conclude with a workshop and some 'pampering' time with head, shoulder and foot massages for all. The informal day will give participants the opportunity to meet other carers, share stories and strategies and gain information from professionals in a relaxed setting.

It will be held on Saturday 3 May, with a sibling workshop for brothers and sisters of someone with additional needs on Sunday 4 May in Tamworth, NSW. This seminar is free of charge. Lunch, morning and afternoon tea will be provided. For information about topics, speakers or organisations, phone Mandy Newton, Project Officer, AGSA, on 02 9211 1462 or email projects@agsa-geneticsupport.org.au

[Source: Warringah Disability Newsletter]

Working Together: SPOT on DD Conference 2008
4-5 September 2008, Citigate Central, Haymaket Sydney

SPOT on DD is short for Speech Pathologists, Physiotherapists and Occupational Therapists on Developmental Disability. The 2008 conference will encourage participants to reflect on service delivery as therapists and the importance of working together. Every day, these therapists work together in multidisciplinary teams, with clients and families as well as other services. Other questions that will be explored are what does working together mean in other disability settings and what does this mean to rural therapists?

For more information and to download the registration forms go to www.spotondd.org.au/conferences.htm

Technology

SpringBoard Lite
SpringBoard Lite is a smaller, lighter simplified version of the popular SpringBoard Plus. It has been designed with children and other entry-level Augmentative and Alternative Communicators in mind and is easy-to-use right out of the box.

Utilizing high quality digitised speech recordings, SpringBoard Lite is certainly not light on features with many built in options you find on more expensive devices included as standard. A true stepping stone into speech generating devices.

To find out more visit www.technability.com.au

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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.