The Scene

Issue 11, 24 July 2006

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Features

CP Awareness Week 2006
Join us in celebrating National Cerebral Palsy Awareness Week from 6-13 August 2006. William H. Macy is our official ambassador for the week and is promoting the theme, ‘Get to Know Us’.

Watch out for national TV and radio spots, flags throughout the Sydney CBD, ads on bus shelters and a brand new CP Australia magazine.

In NSW, some of the activities include….

- Channel 10’s weatherman, Tim Bailey, will be broadcasting live from McLeod House on Monday 7 August. Families are invited to join in the fun from 3-6pm, with special guest, Steve Waugh, and Nova Casanova and Taronga Zoo’s zoomobile.

- Where Are They Now? Parents considering options for their child once they leave school will enjoy a special CP Week evening at Ryde on Wednesday 9 August. ‘Where Are They Now?’ will feature the personal stories of four young adults who have finished school and moved on to university, TAFE and work. Come and celebrate their journeys, find out about the challenges they have faced, and meet and swap ideas with other parents. The evening will be held from 7-9pm at The Spastic Centre, 3a Smalls Rd, Ryde. Supper will be provided. RSVP to Debbie Wooster on 02 9809 7055.

- Perspectives in Print This unique exhibition showcases the photographic talents of people with CP and other disabilities. Launched on Friday 4 August by renowned photographer, Ken Duncan, Perspectives in Print will remain on public display at Luna Park until Sunday 6 August.

- Women’s Health and Wellbeing Day An opportunity for women with a disability to gain information about women’s health, nutrition, looking and feeling good. Enjoy this day of information and pampering at Forestville Community Centre on Wednesday 9 August.

Read more about these and and other CP Awareness Week activities.

Money

Financial Planning for Children with a Severe Disability
More details have now been released about the new Special Disability Trusts legislation that has been passed by the federal government.

The legislation, which comes into effect from 20 September 2006, will allow parents and immediate family members to place up to $500,000 into trust for the future care and accommodation of the person with severe disability, without being affected by social security means test and gifting rules. It is part of a package to assist parents and immediate family wishing to make private financial provisions for the current or future accommodation and care of a son or daughter with severe disability.

A model trust deed and a future care information package are under development, and we will bring you those details as soon as they are available.

Read more about this important new initiative Financial Planning for Children with a Severe Disability.

Reaching Out

The Spastic Centre in Asia Pacific
Make sure you catch the August issue of ‘Notebook’ magazine, featuring The Spastic Centre’s Julia Salmon. Julia is heading up The Centre’s international development team with outreach programs in Fiji and East Timor.

The story tracks a recent trip to East Timor where Julia and her therapy team provide practical support to families of children with CP and training to local community rehabilitation workers.

Read the first part of ‘Helping the Kids’ on the ‘Notebook’ website.

Treatment

The Team Approach to Assessment and Treatment of Spasticity Including Surgical Interventions
Webcast on the Management of Spasticity Using Neurotoxins (Part 4).

The four part series deals with the effective treatment of spasticity using Neurotoxins as well as other treatment interventions including surgery for conditions such as cerebral palsy. In this special three-hour session, Doctors Tom Novacek and Hank Chambers will focus on surgical interventions for the treatment of spasticity such as Intrathecal Baclofen (ITB Therapy), Selected Dorsal Rhizotomy (SDR); orthopedic surgery and others. Doctors Marc DiFazio, Barry Russman, and Terri DiFazio (moderator) will provide an overview and review of the prior three sessions and all will respond to questions on understanding the partnership between families/caregivers and health care professionals in coordinating quality care.

The online program is from 9am to 12 noon on 27 July 2006 AEST (7pm to 10pm on 26 July 2006 US time). This program is available online in three live formats:
- Fully interactive, 2-way audio/video and chat
- One way audio/video streamed with e-mail chat
- Archived (viewed online after the event).

Fore more information, and to register, visit the eparent website.

Parents

Information Sessions for Parents/Carers of Children in their Early School Years
The Carers Support Services of Northern and South Western Sydney Health, and councils of City of Ryde and City of Canada Bay, will be hosting two information sessions for parents and carers in Term 3.

1. ‘Who Can Look After the Kids Out of School Hours’ with guest speakers on issues such as funding, vacation care and OOSH programs. On 14 August 10am to12noon at Five Dock Library (Level 1, 4-12 Garfield St, Five Dock). Morning tea will be provided.
2. ‘Tips to Help You Promote Your Child's Interests’ with guest speakers on communication techniques to get the best results for you and your child, eg dealing with the education system. On 12 September 10am to 12 noon at The Lodge Conference Room (Corner Badajoz and Twin Roads, North Ryde). Morning tea will be provided.

Reserve your seat by phoning Helen on 02 9911 6580.

[Source: Warringah Disability Information Service]

Reading Fun
Starfall is a free website which teaches phonics and reading in a simple and fun way. It can also be used to develop mouse skills as it involves a few clear targets for children to click on. (Note: Some of the pronunciation is US English).

Find Starfall at www.starfall.com

Census 2006

Everyone Counts
Census Night is 8 August 2006 and the Australian Bureau of Statistics (ABS) is very keen to make sure that everyone is included. Details about special provisions for people with disabilities are available in the ABS media release, Everyone Counts.

This year, you have the option of completing the form online or in the traditional paper way. Find our more about the eCensus on the ABS website.

Autism

Living with Autism and Asperger's
'How to Live with Autism and Asperger Syndrome: Practical Strategies for Parents and Professionals' by Christine Williams and Barry Wright, with illustrations by Olive Young.

This easy to read introduction to caring for a child with autism is an ideal resource for teachers and families of a child with autism. In clear and simple language, with many illustrations, the authors tackle common problems experienced in everyday routines such as eating, sleeping and going to the toilet, as well as how to cope with aggression and tantrums, preoccupations and compulsions and how to enable better communication and socialising.

Based on up-to-date research and using many case examples, the authors consider, step by step, why each problem may be happening and suggest a number of solutions.

Teaching Tips for Children and Adults with Autism
‘Twenty Five Great Tips for Teaching Children with Autism’ by Temple Grandin is available on the Ideal Lives website. With useful information on everything from verbal instructions to ideas for teaching reading, this list of tips will be useful for both parents and teachers.

Download Twenty Five Great Tips for Teaching Children with Autism

Sport

The Second Sydney Paralympic Talent Search
The Australian Paralympic Committee (APC) is accepting registrations for sports testing to help identify potential athletes. People with minor disabilities such as mild cerebral palsy or minor vision impairments may be eligible for Paralympic competition as well as amputees and people in wheelchairs. Registrations are at NSW Institute of Sport, 8 Figtree Road, Sydney Olympic Park from 11am to 3pm on 29 July.

For further details contact Amy Winters, National Development Officer – NSW, Australian Paralympic Committee on 02 9704 0515 or 0418 402 216, fax 02 9746 0189, or mail to PO Box 596, Sydney Markets NSW 2129.

[Source: Warringah Disability Information Service]

Arts

Bella Program at 2006 Biennale
Each year the Museum of Contemporary Art runs the Bella art education program for young people with specific needs from 1 September. This year a special event will invite groups of 5-18 year olds with disabilities or disadvantage to attend free art making and discussion programs, based in the gallery spaces, tailored to their abilities and needs.

The program will run for 1 to 11/2 hours from 24 to 28 July. Bella will also be running 1 September to 21 December 2006. For bookings and information phone MCA Education on 9245 2484, email education@mca.com.au or visit www.mca.com.au to make a booking enquiry online.

[ Source: Accessible Arts newsletter – July 2006]

Web Watch

Free Web Browsers with Accessibility Features for People with Disabilities
Browsing the Internet can be a difficult experience for people with disabilities. Web pages vary greatly in their content, layout and display. Navigating a page and finding information can be tricky.

You need a web browser to view pages on the Internet (most people would be familiar with Internet Explorer). Most web browsers have features that can be adjusted to improve accessibility for people with disabilities, such as increasing the size of the text, changing the display colours, removing images and allowing the use of keyboard shortcuts. Two free web browsers with good accessibility features that are worth checking out, are Opera and the Mozilla/Firefox Accessibility Extension (the extra ‘toolbar’ can be downloaded – you need to download Mozilla/Firefox web browser first). For more information and free downloads, go to:

- Opera – www.opera.com
- Mozilla/Firefox - www.mozilla.com/firefox/
- Mozilla/Firefox Accessibility Extension - http://cita.uiuc.edu/software/mozilla/

National Disability Web Portal
This portal has links to information and services on over 700 Australian Government websites as well as selected state and territory resources, such as: Centrelink; Carelink Centres and Directory; CRS Australia; FaCSIA including Business Services; Disability Open Employment Services; Disability Rights; HealthInsite; JobAble; Information for individuals and communities; and National Auslan Booking and Payment Service.

Visit the National Disability Web Portal

Stronger Families and Communities
Resources for families and service providers on parenting can be found on the Australian Institute of Family Studies website.

A special parenting page links to resources such as parenting fact sheets and how to develop Individual Family Service Plans (IFSPs). Find it at www.aifs.gov.au/sf/parenting.html

Technology Research

Mind Moving
Research scientists in the United States are trialling a brain sensor that can be implanted into the part of the brain that controls movement. It is still very early research, but one day people who are unable to move their arms or their legs due to spinal cord injury, brain stem stroke or muscular dystrophy might be able to control and external device by harnessing the signals from their motor cortex directly.

ABC radio’s ‘The World Today’ highlighted this in a story on 19 July.
Read the transcript of Mind-Moving: science on the verge of reality.

Conferences .. Workshops .. Forums (Service Providers)

Papers From ACROD Seminar - Available Online
Papers from the recent ACROD NSW seminar, 'Conceptualising Disability & Planning Support' held in Sydney on 26 June are now available to download free from the ACROD website. With thought provoking presentations by Dr Ian Dempsey, Belinda Epstein-Frisch, Barbel Winter, Dougie Herd and Dr Karen Nankervis, the papers are well worth a look.

Beyond Speech Alone
8 August 2006

Nick Hagiliassis & Mark Di Marco will be presenting Beyond Speech Alone: Guidelines for Psychologists providing counselling services to people with disabilities and complex communication needs.

The seminar will be held at Sydney Children’s Hospital, Randwick, Level One Lecture Theatre on 8 August 2006 from 2.30pm to 4.30pm. No pre-registration required. Free for CEDP members and SCH staff, $20 for non CEDP members and $10 for students.

Nick is the Psychology Advisor with Scope and a Senior Clinician with the Mid West Primary Mental Health Team. His clinical and research interests are in the area of disability and mental health and he is a member of the Bridging Project, a project which is examining the mental health needs of people with disabilities and associated complex communication needs. Mark has worked as a psychologist for the Department of Community Services in Sydney, MENCAP in London and currently works as a clinician with Scope. He has had a strong interest in counselling for people with an intellectual disability and complex communication needs and is also a member of the Bridging Project.

For further information contact Elise Stumbles at estumbles@tscnsw.org.au. This seminar is part of the Professional Development Seminar Series, supported by Sydney Children’s Hospital, Psychology Department and the College of Educational & Developmental Psychologists (NSW).

Sexuality Workshop
18 October 2006

This half-day course is designed to raise the knowledge, skills and comfort levels of service providers in the area of sexuality and acquired disability. The course covers attitudes towards sexuality, effects of acquired disability on sexuality, sex workers, a panel discussion, and displays of available services and equipment. The course will be facilitated by recognised leaders in health including FPA Health and Touching Base.

The workshop will be held at the Brighton Le Sands RSL Club, Function Room, 351 Bay Street, Brighton Le Sands NSW 2216 from 1pm to 5.30 pm on 18 October 2006. The cost is $150 plus GST per person. Closing date for registration is 13 September 2006.

For further information contact Leanne Allen on 02 9808 9632, email allenl@doh.health.nsw.gov.au or Sylvia Scott on 02 9808 9627, email scotts@doh.health.nsw.gov.au.

Service Providers

AIHW - Children with Disabilities
A new report has been released by the Australian Institute of Health and Welfare (AIHW) on children with disabilities, aged 0-14 years. The report is an update to a major publication on this topic, which was released in 2004.

The new report shows that the vast majority (97%) of school-aged children with disabilities attend school, with 89% in mainstream schools and another 9% in special need schools. More than half (63%) of the school-aged children experienced some difficulty at school - the most common issues were fitting in socially, communication and intellectual and learning difficulties.

The report estimates that, in 2003, 317,900 children (about one in 12 children or 8.3% of all children) had a disability. About half of these children had a severe or profound core activity limitation. The update showed that boys were more likely than girls to have a disability - 10% of boys compared with 6.5% of girls, and more likely to have a severe or profound core activity limitation - 5.4% for boys compared with 3.1% for girls.
Children with conditions such as autism and intellectual impairment were likely to have a severe or profound core activity limitation (87% of children with autism, and 75% of children with an intellectual impairment).

Carers and their needs were also highlighted in the report. The report found that 91% of the primary carers of children with disabilities were the children's mothers. Most primary carers of children with disabilities spent 40 hours or more a week directly caring for their child. Of all primary carers surveyed, 48% reported needing more support, with more respite care and more financial assistance.

Download Disability Updates: Children with Disabilities 2006 from the AIHW website.

For Sale

Oxford Midi 170 (Electric Hoist)
Mobile electric hoist with 170kg weight capacity. Linak brand operator and battery pack with charger. Yoke frame, manual legs, emergency lift and lower function. Comes with Pelican Premier Lifting Sling (size small child). This item is unused and therefore in brand new condition.

$1600. (The purchase price for this package was $2,424.) For further information please contact Angela Sweeting on 0411 083 791.

Bathmaster Xtra Complete Electric Bath Chair
Electric bath chair - weight capacity 142kg – suitable for child or adult. Includes swivel transfer seat (came as option extra feature). Hand held or wall mountable remote with battery charger. This unit enables you to transfer person to bath seat at hip height and then lower them into bath. The unit reclines as it descends. It is covered in soft, thick polypropylene mesh (comfortable) which allows water to drain as bath chair is raised. Use in standard bath – has strong suction feet.

This item has had very minimal usage and is in an as new condition. This bath chair to be quite practical and reliable and its minimised lifting required at bath time. The purchase price for this package was $1,860 but will sell for $1200. For further information contact Angela on 0411 083 791.

Single Bed Cot - Free (ACT)

This solid pine single bed size cot has gates that open out to minimize lifting rather than a side that goes up and down. The gates are secured with slide bolts in the closed position. The bed was used by a boy with autism from 18 months to 6 years old with wonderful success. He then became secure enough to go into a bed without cot sides.

The owners are not looking to sell - only to give to another family who could use it. They found it difficult to source what they needed and would like to prevent the same difficulties for another family! The bed is very good quality (it would be $1100 - custom built).

For further information contact Roxanne on 02 6242 5353 or 0409 986 774. If it needs to be freighted somewhere, Roxanne would only request the family organise and pay for it, or they can come and pick it up from Ngunnawal, ACT.

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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.