The Scene

Issue 17, 27 October 2006

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Feature

Thought for the Day
“We are all born the same. We have a soul, we share and breathe the air. We are only limited by our minds in our abilities and what we can achieve. So, could you please tell me who in this photo is the person with a disability?”

This photo and caption is by Spiro Pappas and was part of the 2006 Perspectives in Print photo exhibition held during CP Week. More entries will be featured in the December issue of The Spastic Centre’s ‘I Am’ magazine.

Parents

Seeking Volunteer Children with Hemiplegic CP
Members of the research team at The Spastic Centre are working towards becoming certified raters of the Assisting Hand Assessment. This is an assessment for 18 month to 12-year-old children with hemiplegic cerebral palsy that assesses children’s use of their affected hand. Using this tool will allow us to reliably measure the effectiveness of certain interventions during research projects.

We are looking for children who could assist us with the certification process by being ‘assessed’. The ‘assessment’ is conducted through an enjoyable play session using various toys, which only takes approximately 15 minutes. The session would need to be recorded on video for rating and training purposes.

If your child is aged between 18 months and 12 years, has hemiplegic cerebral palsy, would like to be involved, and you are happy to consent to their being videoed during a short play session, please contact Nicole Sharp, Research Assistant, on 02 9451 9022 or nsharp@tscnsw.org.au

Raising Children Network – A New Website
The Parenting Research Centre in Victoria has recently launched a great new website for parents, called the Raising Children Network. The content is written for parents in general, but does have some specific information on children with a disability.

Children’s Health Toolkit
The Spastic Centre is developing a Children's Health Toolkit, which will be an expanded version of the baby book that parents receive when their child is born. The kit will be a zip folder, where you can keep the major records of your child's health, notes that you take before and during visits to health professionals, the medical conditions that are common in children with CP, etc. The framework is detailed more fully below.

We'd love some feedback from parents as to what they would find useful in this kit. We're seeking funding for printing and packaging, so we should be able to do something quite attractive and substantial. Please email your ideas for topics or other content to Robyn Cummins at rcummins@tscnsw.org.au

These are the suggestions we've had so far:

Introduction: Overview and how to use the guide | CP and health | Basics on CP - classification, severity, topography, gross motor curves, evaluating treatments factsheet | Role of medical practitioners and other health professionals | Seeking more information – how to evaluate whether an intervention is indicated for your family | Parent/carer’s own health | CP Register |

Specific topics: Gastrointestinal/Nutrition/Feeding, Swallowing, Oral motor dysfunction, Gastric reflux, Gastrostomy, Saliva control, Uro – Constipation/Incontinence/Toilet training/, Epilepsy/seizures, Vision, Hearing, Sleep, Respiratory, Dental, Cognitive/learning/ADHD, Happiness and wellbeing - Emotional – behaviour / depression / anxiety, Pain management, Medical and surgical interventions – physio, oral medication, intrathecal medication, SDR, BOTOX, surgery, Complementary and alternative interventions, Physical fitness.

Types of doctors/therapists (overview of each and how they can help).

Tools and Templates:
- CP history – form and information about CP Register.
- Medical History (available as Word document on web to save and modify)
- Birth date, prematurity, birth problems
- Hospitalisations / surgeries
- Place to note doctors’ names and contact details
- Immunisation records
- Adverse reactions to medications
- Allergies
- Family medical history
- Current medications

- Personal care profile form.
- Tracking Doctor visits – questions, answers, follow up date, referral to, medications given (to record outcomes and instructions given by health professionals).

Other:
Health care complaints | Medicare | Bulk Billing | PBS | Private health insurance.

Multicultural

Youth Development Scholarships for the Chinese Speaking Community
Young people with disabilities from the Chinese speaking community are invited to apply for one of three Youth Development Scholarships of $1000. The scholarships will support educational, cultural or sporting pursuits and successful applicants will be supported to engage in youth leadership activities. To be eligible, applicants must have a disability, be resident of NSW and be aged between 15 and 30 years.

For further information, please contact Liz Foy, General Manager Research and Service Development, at lfoy@tscnsw.org.au. Expressions of interest must be received by 10 November 2006.

Out & About

Wheelchair Accessible Self Guided Tour
Self Guided Walking Tours have just released a new, wheelchair accessible tour around the Rocks district in Sydney. To access the tour visit the website, pay the $10 fee on their secure payment system (Paypal), and you are provided with login details to download The Rocks Wheelchair Accessible Tour. The tour consists of a 21-track audio (MP3), containing storytelling tracks at designated points of interest along the way, as well as directional information tracks. Upload this onto your iPod or MP3 player or burn it onto a CD to listen on a Walkman. Visitors also receive a map and information about how to get there. The stories are all genuine, researched truths and legends around the Rocks area.

For further information on this and other tours visit www.selfguidedwalkingtours.com or go directly the wheelchair accessible tour at www.selfguidedwalkingtours.com/walks/TheRocksAccessible.php. The website provides more information about the tour, getting there and general information about the Rocks.

Be Prepared

Disaster Preparation for People with Disabilities
With the summer storm and bushfire season approaching, it’s timely to start thinking about disaster preparation, particularly if a member of your family has a disability.

State Emergency Service (SES) – The SES is a voluntary emergency and rescue service. Primarily responsible for flood and storm operations, the SES also provides the majority of general rescue effort in the rural parts of the state. This includes road accident rescue, bush search and rescue, and other forms of specialist rescue. The SES website includes some excellent guides on preparation for storms, floods and putting together a home emergency kit. The guides are available in English and a number of other languages www.ses.nsw.gov.au

NSW Rural Fire Service (RFS) – The RFS is responsible for fire suppression and prevention activities in over 90% of the state of NSW. The RFS website includes a huge range of factsheets on bushfire preparedness, hazard reduction and bushfire survival. Find it at www.bushfire.nsw.gov.au

Disaster Preparedness for People With Disabilities - This Red Cross booklet, Disaster Preparedness for People with Disabilities, is written for people in the USA, but there are many ideas and principles that translate to Australia. It contains information that can help you develop a personal disaster plan with checklists and extra space for you or a carer to use to organise information that will help you prepare for a disaster.

Health

Effectiveness of Complementary & Self-Help Treatments for Depression in Children & Adolescents
Depressive disorders are estimated to affect 3% of Australians aged 6–17 years every year. Many young people remain untreated and, for those who receive professional help, the range of evidence-based interventions is limited. Although antidepressants are effective in treating adults with depression, it is not clear whether they are safe and effective for children and adolescents. Recent meta-analyses have cast doubt on the clinical significance of antidepressant efficacy and raised concerns about increased suicidal behaviours. The Australian Therapeutic Goods Administration has instituted new warnings about suicidal behaviour on antidepressant packaging, and the Australian Colleges of Psychiatry, General Practice and Physicians have published advice on prescribing antidepressants for children and adolescents in light of this

Read the entire article on the MJA website.

Medicare Allied Health Initiative
Medicare has recently launched an allied health and dental care initiative. This allows chronically ill people who are being managed by their GP under an Enhanced Primary Care (EPC) plan to access Medicare rebates for allied health services. From 1 November, people with mental health related needs will be able to see qualified allied mental health professionals under this scheme. A factsheet with more details of rebates etc will be available on the Medicare website from 1 November 2006.

More details in this media release from Christopher Pyne, the Parliamentary Secretary to the Minister for Health and Ageing, Better Access to Mental Health Services.

Sports

Disability Education Program
NSW Sport and Recreation are currently running the Disability Education Program for teachers, teachers’ aides, coaches, sports administrators, managers and physical activity providers to better include people with a disability.

NSW Sport and Recreation are running 'Count Me In’ and a 'What is Disability Sport' modules. These three-hour workshops are conducted by highly motivated and experienced presenters at a fee of $33 (including GST), Participants will receive a certificate, practical experience and knowledge, resource material and an extensive support network. This workshop is aimed towards a general community sport and awareness workshop suitable for everyone interested or involved in the provision of sporting opportunities that include people with a disability.

Information and enrolment forms on all courses is at www.dsr.nsw.gov.au/training/dep_courses.asp

For further information contact Kelly Brown, Development Officer, Central Region, NSW Sport and Recreation on 02 9006 3815 or 0411 205 114 or email kelly.brown@dsr.nsw.gov.au

Therapy

OT Factsheets
The Royal Children's Hospital in Melbourne have developed some practical, user-friendly health information factsheets as a resource for therapists to be used in conjunction with an occupational therapy intervention program. The following health information fact sheets are available:

Developing a pencil grip | Hand preference | Prewriting skills | Pencil pressure | In-hand manipulation | Low muscle tone | Shoulder stability and control | Activity ideas to develop arm co-ordination, strength and endurance | Hand and finger strength | Hand and finger strength – Adolescents | Playdough and exercise putty | Encouraging young babies to use their hands | Encouraging older babies to use their hands | Encouraging toddlers to use two hands | Encouraging preschool children to use two hands | Encouraging school children to use two hands | Splints | Pressure garments | Scar management | Hand exercises | Thumb exercises | Finger exercises | Finger stretches | FDP tenolysis exercises | FDS tenolysis exercises | Supination exercises |

Find the factsheets at www.wch.org.au/ot/infosheet/index.cfm

PDF (print-friendly version) of this issue of The Scene.

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.