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events | GSAW| Family Day| newsletters, publications and articles | March-April 2009 Update

• GSNV News
• Group News
• Genetic Health Services Victoria News
• Conferences
• Workshops and Seminars
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• Grant Opportunities
• Reviews
• Of Interest
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GSNV NEWS

Peer Support Training - Monday 10th August

Professional Counsellors are helpful, but there is nothing more powerful than talking to someone who has been "in the same boat" as you. GSNV Peer Support Training is available for all individuals, including support group staff and volunteers, who act in a peer support capacity. Our aim is to help you feel empowered to listen and talk to others who are facing genetic challenges, and share your wisdom and experience. For more information, download the Peer Support Training flyer or contact Tarli on (03) 8341-6315 or via email to tarli.bogtstra@gsnv.org.au

Small Grants - Applications Close Wednesday 29 July 2009

GSNV invites applications for Small Grants for between $50 and $400 for projects that empower people with genetic conditions through education, support and/or advocacy. We realise your time is limited, so we have ensured our application forms are short! Your group does not need to have DGR status for this grant. However applicants must be current financial members ($22/year, $11 concession). Applications will be measured against the selection criteria. Download the Small Grants Information and Application Form here.

Membership Renewals - Now due!

Just a reminder that member renewals are now due. Thanks to everyone who has already sent in theirs…your support ensures we can continue supporting people, families and groups of people affected by genetic conditions. For more information about renewing your membership, or how to make a tax-deductible donation, please download the membership renewal letter or contact Penny on (03) 8341 6315 or email to penny.dodds@gsnv.org.au

Our Stories - Presentation to Genetic Health Services Victoria

On Friday 19th June GSNV presented at the Genetic Health Services Victoria Seminar, Royal Children’s Hospital. Tarli presented an update on GSNV and how we can assist Genetic Health staff in helping families that they see. We also had two wonderful speakers, Penny Dodds and Maria Kastoras, who very kindly shared their own personal stories with us. It was a marvellous opportunity where we were able to inform health practitioners about the impact that a genetic diagnosis can have on oneself, family members and friends, and also how useful support services can be. We look forward to presenting future seminars like this at Genetic Health Services Victoria and other hospitals around Melbourne.

Birth Defects Register Newsletter for You

The Birth Defects Register is considering developing a community newsletter, outlining the key findings of the Register in plain English. The Register is keen to hear about what would be relevant/interesting to you or your support group. To provide your ideas/feedback, please email Leah Lonsdale or call her on 03 8341 6315.

Report: Motorcycle and Vintage Car Ride

On Sunday 12th October, friends and members of GSNV and Cystic Fibrosis Victoria were warmly invited to attend a "Motorcycle and Vintage Car Ride and BBQ lunch". This was a wonderful day full of fun and festivities proudly organised by Chapters of the Order of the Eastern Star and the Victorian Masonic Motorcycle Association (VMMA).

Awareness Week 2010

From 2010 Awareness Week will be held in April each year, to coincide with International DNA Day. Planning has started for the 2010 Awareness Week. We're recruiting people to help organise the Week. If you'd like to be on the organising committee, please contact the office on (03) 8341 6315 or email leah.lonsdale@gsnv.org.au .

Membership Renewal

Membersehip renewal notices will be posted during the next six weeks. You are invited to renew your membership for the GSNV for the coming year. If you are on the mailing list or have let your membership lapse, please consider becoming a full member so you can receive all the benefits of membership. The cost is $22 or $11 concession for individuals and/or groups.

What are the benefits of being a member of the GSNV?

• Stay informed of news and events through our monthly mini-updates and regular newsletter
• FREE or discounted registration for GSNV events, including workshops, seminars and conferences
• Access to GSNV's Small Grants of up to $400
• Access to nominate for committee positions
• Ability to nominate people for our "Art Of... Awards"

You will be supporting the important work of the GSNV, providing information, education, support and advocacy to/for people affected by genetic conditions.

GROUP NEWS

Cancer "Gene Support"

The Cancer Information and Support Service has launched a world-first telephone support program for people who carry genes that may increase their risk of developing cancer.  The “Gene Support” program will enable someone who has been tested and found to carry a cancer susceptibility gene to speak with a volunteer who is in a similar situation.  Gene Support volunteers are men and women who carry these genes and have been trained to help others to feel less worried and more in control of their situation. 

"Time Out" stands for "This Is Me, Everybody!"

TIME OUT run groups, workshops and excursions for children and young people who have a brother or a sister with a disability, and also run activities for young carers.

Sometimes, having a brother or a sister with a disability can mean missing out on some things; attention, activities just for them, the chance to feel like a carefree kid now and again.  It can also mean feeling different from other kids who don’t understand what it’s like to be a sibling of a child with a disability.  Sibling groups can assist. The groups provide a fun, safe environment in which to meet other siblings and say: “T.I.M.E. Out - THIS IS ME EVERYBODY!”

“WHAT’S ON” FOR SIBLINGS & YOUNG CARERS in the Northern Metro region in 2009

There are 2 regular activities running in 2009:

• fortnightly groups for 8 – 13 year olds, on Tuesday afternoons, at Brunswick and at Broadmeadows throughout the school term
• “Give Me 5” - a teen sibling and young carer group for 12 – 18 year olds, which runs on the last Thursday of every month, from 4.30 to 7.30 pm, in Reservoir

We also run a variety of other services and activities. If you would like your child to attend, or wish to discuss any issues regarding helping siblings and young carers please contact Meg Moorhouse, Coordinator, T.I.M.E. Out Sibling Program, 123 Albion St, Brunswick, Vic 3056, Tel: 9385 3211.

Do you have Klinefelter Syndrome (KS)? Do you know someone who does? You’re not the only one.

You’re not the only one… Klinefelter Syndrome is a very common genetic condition in men, yet many go undiagnosed and untreated. There have been many studies on the medical aspects of KS, but there is not much knowledge about how being diagnosed with KS might affect the person – the psychosocial impact. We want to change this.

Our study…
Andrology Australia, the national men’s health organisation, together with the Murdoch Children’s Research Institute, Prince Henrys Institute of Medical Research and Monash University, want to understand more about KS.

We are seeking individuals with KS aged 18 years and older, to participate in our study and share their views, opinions, experiences and stories of what it is like to be diagnosed with KS and to live with KS, including the good and the bad. Because features can vary greatly between people with KS, we are keen to involve as many individuals as possible - of all ages, stages, and walks of life. This includes people that may have been diagnosed when their mothers were pregnant with them.

What does the study involve?
Participating in the study involves completing a written questionnaire (telephone assistance is available if required) of about 30-40 minutes. You will receive a gift card as a thank you for your time. Before you decide to be involved, more information on all parts of the study is available to you. Even if you agree to participate, you can change your mind about any part of the study, at any time.   

I’d like to find out more – what now?

Please give me a call on Ph: (03) 8341 6370 or email klinefeltersyndrome@gmail.com, and tell me the best times and ways of contacting you.  Thank-you, Amy Herlihy, Public Health Genetics, MCRI, 10th Floor, Royal Childrens Hospital, Flemington Road, Parkville, Victoria 3052. 

SAFDA (Support After Fetal Diagnosis of Abnormality)

SAFDA is a shared experience group for families who have had to make difficult decisions about termination of pregnancy as a result of a fetal abnormality. At the time of diagnosis, testing and decision-making can often seem overwhelming. Events move so fast that there maybe no time to reflect fully. The experience may be so profound that it takes months for its meaning to sink in. Family and friends may offer a lot of support at this critical time. As life moves on, many parents welcome contact with others who have shared similar experiences. It can be helpful to gather with others who understand, to share and reflect on what has happened.

The shared experience meetings provide an opportunity to discuss issues of mutual concern, with no set topic for discussion. The group members direct the discussion and participate as much as they choose. A newsletter is produced and distributed after each meeting. The meetings are confidential, and we ask that the confidentiality of those present be respected. The meetings are held on Tuesday evenings from 7-9pm at either the Royal Women's Hospital on cnr Grattan St and Flemington Rd, Parkville; or SIDS and Kids at 1227 Malvern Rd, Malvern.

2009 Meeting dates:
18th August 2009 – Royal Women's Hospital
17th Nov 2009 – SIDS and Kids

If you would like more information about SAFDA, to RSVP for a meeting or be added to the mailing list, please contact Lydia Gaffney, Genetic Counsellor, by email on lydia.gaffney@ghsv.org.au or phone on 8345 2180.

MyTime Support Groups for Parents

MyTime Support Groups for Parents now has groups running in 3 locations throughout Melbourne’s west.  Join with parents, carers and guest speakers on topics of interest.  The groups meet in Footscray at the Tweedle Child and Family Health Service on Tuesdays from 9.30am – 11.30am, Laverton at the Laverton Community Children’s Centre on Tuesdays from 1.00pm – 3.00pm and Melton at the Hillside Community House Recreation Reserve on Wednesdays from 9.30am – 12.30pm.  Enquiries and registrations please contact Eleni on Ph:  9689 1577.

GHSV NEWS

Update on the future for Genetic Clinics for Adults

Prof Agnes Banker, Director of Genetic Health Services Victoria, said that Genetic Health Services Victoria has been in negotiation with the DHS (Department of Human Services) for some time regarding transitioning of adults who have metabolic conditions to an adult facility. The arrangements are yet to be confirmed, but Genetic Health Services Victoria will keep us informed.

Prof Bankier went on to say that “In regard to people who have genetic conditions, including bone dysplasia’s, transition will only occur when equivalent adult services exist and such a transition will be negotiated together with the people concerned. If people need surgery or other services that can only be provided in an adult facility, their care will be negotiated for them.”

Champions for Human Rights

Alison van Bree

In January 2008, Victoria adopted a local Charter of Human Rights and Responsibilities.  Our Victorian Charter encompasses Civil and Political rights such as the right to life, liberty and freedom from torture and slavery, freedom of opinion, expression and religion. This Charter will be reviewed in 2011 when consideration will be given to the inclusion of Economic and Social Rights and Environmental and Cultural Rights.

Human rights are the basic entitlements that belong to all of us just because we are human beings.

Genetic Health Services Victoria are actively learning the language of the Charter and reviewing business practices to ensure all programs and services are delivered within the principles of the Charter, extended training for staff will form a part of this program over the coming months.

On the 17th of June Genetic Health welcomed staff from the Castan Centre for Human Rights Law, Monash
 University, for a tour of our clinical and laboratory services and discussions on the implications of privacy and the Charter in our setting. This successful meeting was also attended by Leah Lonsdale and Moira Rayner from GSNV. The meeting gave a new perspective to joint activities of our services and planning for the 2008 Genetic Support Awareness Week Seminar.

VCGS initially engaged with Professor Sarah Joseph, Director of the Castan Centre, through her development of a case study on the VCGS for inclusion in Human Rights Translated: A Reference Guide for Business publication which is being jointly developed by the International Business Leaders Forum (IBLF), UN Global Compact Office, Castan Centre for Human Rights Law (Monash University, Australia) and Office of the UN High Commissioner for Human Rights.  This publication highlights the role of privacy and human rights in the clinical genetics setting; we eagerly await the publication later this year.

CONFERENCES

2009 Cornelia de Lange Syndrome Conference - Brighton, UK, 22-26 July, 2009

The 2009 Conference, hosted by CdLS UK and Ireland, will be held at Brighton on 22 - 26 July 2009. More details will be posted on the Cornelia de Lange Syndrome Association (Australasia) website closer to the event.

Joint Symposium meeting CFC, Noonan and Costello Syndromes - Berkley, California, August 1-4, 2009

CFC International will hold its 5th International Conference and Medical Clinic program on August 2-4, 2008 in Berkley, California. In addition to this event there will be a joint Symposium meeting of the Genetic Syndromes of the RAS/MAP kinase Pathway on August 1-2. 2009 at the Berkley Double Tree Marina. The world’s leading researchers and clinicians will give presentations on many topics ranging from advances in understanding the underlying biochemistry, to the latest findings utilizing various models systems and what future research can be expected on CFC, Costello, Noonan and Neurofibromatosis, which are all on this pathway. This exciting Scientific meeting will bring together CFC, Noonan and Costello Syndromes for the first time in the USA!

During the family conference we have the following tentative workshop program planned along with other exciting keynote speakers:

• Behavioral Issues
• Skin problems encountered with CFC
• Feeding Disorders & GI problems
• Endocrinology
• Wills & Estate Planning
• Transition Planning
• Orthopedic concerns
• Ophthalmology Research Findings
• Speech & Language Disorders
• Genetic Testing and What does it all mean?
• Cardiology Concerns with CFC Syndrome
• Working with your Primary Care Peditrician
  

For a conference registration form please check the CFC International website after January 1, 2009.

Albinism Fellowship of Australia "Shining the Light on Albinism" Conference, Queensland 12-13 September, 2009

The conference will include interactive workshops on self esteem, O&M, employment and education.  Crèche is available. For more information, please contact the President, Kim Gillespie, on 0425 229 799 or visit the web site at www.albinismaustralia.org .

2009 National SSPA Convention - Anglesea, Victoria, 20-26 September, 2009

The 2009 Convention Organising Committee have found a great site for the 2009 SSPA Convention at Anglesea, on Victoria’s spectacular Great Ocean Road. The site is the YMCA Anglesea Recreation Camp and is situated on a beautiful stretch of natural bush property approximately a 90 minute drive from Melbourne. There is accommodation for up to 150 people with disability access to all rooms. The Camp website address is: http://www.camps.ymca.org.au/htm/htm_anglesea.asp

We have a draft program in place for the week which includes a trip down the Great Ocean Road through the scenic towns of Lorne and Apollo Bay to the Otway Fly in the Otway Ranges. Also a trip to Torquay to the famous Bells Beach and Surf Museum is planned. This day would also include a Surf morning with Surf school, similar to the one at Bonny Hills last year.

For updates and registration information please visit the SSPA website.

The Chromosome 18 Registry & Research Society (Aust) Inc 2009 Annual Family Meeting - Christchurch, New Zealand, 26-28 September 2009

The 2009 Chromosome 18 Registry & Research Society’s Australasian Regional Annual Family Meeting will be held from Saturday 26th to Monday 28th September in Christchurch, New Zealand. A wide range of topics will be covered. The guest speaker will be Dr Jannine Cody from The Chromosome 18 Clinical Research Center, Texas, USA. This is an opportunity to network with affected Chromosome 18 families and individuals.

For enquiries contact Marlene on Ph:  +61 02 9580-5707 or chromosome18@optusnet.com.au, or visit the conference website at www.chromosome18.org

The 9th Biennial National Angelman Syndrome Conference "West Coast Angels" - Perth, WA, 2-4 October, 2009

The 9th ASA conference "West Coast Angels" will be held at The Esplanade River Suites on the 2nd to the 4th of October 2009. Perth accommodation is at 85% capacity at the moment and in high demand so it is not too early for people to start booking. You need to contact the hotel by telephone and mention our conference to receive the a discounted rate for accommodations. Ph: +61 08 93670300.

Any information or queries can be directed to the WA Vice President, Kellie Wild, Home: 08 9409 9776 Mobile: 0419 190 953

For more information please visit the Angelman Syndrome of WAwebsite.

WORKSHOPS AND SEMINARS

Impact of Caring - Wednesday 15th July, 12.00 – 2.00 pm

Caring for a loved one can take its toll and it is equally important to look after yourself. The City of Melbourne and Carers Victoria offer two informative sessions help carers manage their caring responsibilities while being mindful of their own physical and emotional needs. Both sessions are held Melbourne’s Docklands. To find out more and to register: phone Tasia Karlis on (03) 9658 8587 or
email taskar@melbourne.vic.gov.au.

How to Develop an IT Strategic Plan - VCOSS Thursday 16th July, 1.30 – 3pm

How do we ensure our critical information and communications infrastructure can grow with our organisation? In this seminar, Pere Ruka (MacKillop) and Elaine Cope (WIRE) will give a practical demonstration on developing an ICT strategic plan that reflects your role and strategic direction, whether you’re organisation is large or small. The seminar is run by the Victorian Council of Social Services and will be held at the Queen Victoria Women’s Centre, 210 Lonsdale Street, Melbourne. The seminar is FREE but you need to book. For more information and to book please visit the VCOSS website.

Making Decisions: running meetings, AGMS & changing your constitution - PILCH Thursday 6th August, 9.30am – 12.30pm

Do you shiver at the thought of organising your group's AGM? Do you quail at how to handle those tricky questions from the floor of the meeting, or how to deal with the persistent interjector? Are your Rules out of date but no one on the Committee knows how to go about changing them? This interactive seminar will include how to run an AGM and what you should know about your Rules. Come along and feel prepared when your next AGM rolls around!

When: Thursday 6 August 9.30am-12.30pm (registrations open at 9:00am)

Presenters: Alice Macdougall, Anna Lyons & Sarah Shnider (Freehills Lawyers)

Venue: Freehills, Level 42, 101 Collins Street

Cost: $30 Light refreshments will be provided.

Expressions of interest in this seminar can be emailed to connect@pilch.org.au, or visit the PILCH website for more information.

CISMFA: Critical Incident Stress Management Foundation Australia

CISMFA is a not-for-profit organisation offering short courses throughout the year in areas such as crisis intervention, trauma counselling, managing violent situations, suicide prevention / intervention, and compassion fatigue. Courses are generally 1-2 days, and are held in Carlton. For information on course topics and what is provided, visit http://www.cismfa.org.au/education/descriptions.htm#basic .

TRAVEL

Public Transport Ombudsman

Victoria now has an office that people can ring if they have any problems with train, tram or bus services. The Ombudsman, James Harnett, can be contacted on freecall 1800 014 111.

GRANT OPPORTUNITIES

Self Help Funding Rounds - Department of Human Services (Health) and Office for Disability

These two very important funding rounds for health and disability self help groups will shortly be advertised for 2009-10. It has been decided to bring the advertising date forward by a few months to enable groups to receive their grant payment much earlier in the financial year. It is planned to advertise the health self help program in the Herald Sun newspaper on Wednesday 22 July 2009. From this year onwards, the disability self help round will be funded and administered by the Department of Planning & Community Development’s Office for Disability. Both Departments will run separate advertisements for their respective programs but these will appear side-by-side on the same day.

The Survival Fund

The Survival Fund is an initiative of the Walter and Eliza Hall Trust, created with the aim of raising additional funds to assist those affected by poverty who find themselves in a crisis.

The following characteristics are indicative of the circumstances in which we may be able to assist:

• household income levels at or below the level of Centrelink benefits
• no major assets that could be realised
• no other resources that can be accessed (e.g. savings)
• families with young children, particularly single-parent families
• families with disabled children
• assistance has been sought/is being sought from other charitable organisations
• some unexpected catastrophic event has caused a crisis
• no assistance is available from family or extended family members
• time payment options have been exhausted in respect of utility and rental arrears if assistance is being sought for these items
•  financial counselling, where appropriate, has been embraced in an effort to prevent future crises
•  applicants have demonstrated some self-help behaviour and are endeavouring to plan for a viable lifestyle within their resources

If you would like further information please do not hesitate to contact us on (02) 9264 9480 or email us at wehalltrust@bigpond.com or see http://www.thesurvivalfund.org.au/

The Macquarie Foundation Grant DGR Community Services and Development Grant

The Foundation’s funding criteria is flexible and open.  Applications are welcome for funding from a diverse range of community-based initiatives that are working in innovative ways to provide long term benefits. Each application is assessed on its individual merit.  Traditionally, beneficiaries of the Foundation come from areas of education, arts, health, research, welfare, health care and environment.  Funding:  Various; Closing Date:  ongoing, apply by mail. 

Contact:  Ms Sally Shepherd, Manager, The Macquarie Bank Foundation (02) 8232 7554 or visit the Macquary Foundation Grant Website for more information.

The Reichstein Foundation Grants ITEC (DGR Preferred)

Community Services and Development grant to work for social change in order to create an equitable distribution of wealth and power and a healthy and sustainable environment.  The Reichstein Foundation's current priority is to support: 

• Indigenous people
• People with a disability
• New arrived communities

Maximum funding is   $20,000,   Closing Date:  ongoing, apply by mail.

Contact by email, Phone (9650 4400), or visit the website for further information.

REVIEWS

Too Late to Die Young - Nearly True Tales from a Life

Harriet McBryde Johnson, 2005 Picador, New York, NY

Review by Catherine McLean

"I used to try to explain that in fact I enjoy my life, that it's a great sensual pleasure to zoom by power chair on these delicious muggy streets. But it gets tedious. God didn't put me on this street to provide disability awareness training to everyone who happens by…

"For me, living a real life has meant resisting these formulaic narratives. Instead of letting the world turn me into a disability object, I have insisted on being a subject in the grammatical sense: not the passive "me" who is acted upon, but the active "I" who does things. I practice law and politics in Charleston... I travel. I find various odd adventures. I do my bit to help the disability rights movement change the world in fundamental ways.

"And I tell stories."

And she does. Magnificent stories. Stories that had me glued to the computer screen for an entire weekend after discovering her published essays online, then resolving to find a copy of her book and devouring it in the space of one day when it finally arrived.

Harriet McBryde Johnson's memoirs begin with her realisation at age three or four that - according to popular telethon wisdom - she will die young. But at the same time, life is not over - "When I die, I might as well die a kindergartener," she reflects. This experience will help inspire her later protests against telethons which are “all about stirring up pity when we don’t want pity”. She recounts her teenage fascination with Dracula, whose story shows that 'death is not only for people like me', and her surprise that others appear unaware of this.

This probably makes the essay sound morbid. It isn't. Like all the essays in this book, it is thought-provoking, fascinating and often hilarious. Read more...

ANSWER - Antenatal Screening Web Resource

www.antenataltesting.info

Review by Tarli Bogtstra

All pregnant women in Australia are offered screening and testing. Whilst this web site, ANSWER, is based in the United Kingdom, it does provide basic information about the screening and diagnostic tests available to all pregnant women, even in Australia. ANSWER offers balanced information about disability to help you and your family decide whether to test, or not to test, whether to continue with a pregnancy, or not to. We would always advise you to see health professionals, and ANSWER cannot tell you what to do, however it may help you understand your options more. Read more...

OF INTEREST

Home Medicines Review

A Home Medicines Review (HMR) involves a pharmacist visiting your home to check and discuss all your medicines.  The visit is organised in consultation with your GP, who receives a report afterwards.  Talk to your pharmacist if you want to find our more about HMRs.

Written by consumers for consumers, MedicinesTalk is a free quarterly newsletter that gives you reliable, accurate information and useful hints on managing your medicines.To Find out more about MedicinesTalk  see http://www.nps.org.au/consumers/publications/medicines_talk.

Campaign to bridge cultural gaps

Reproduced from MedicinesTalk Winter 2008 – National Prescribing Service

Australia has cultural communities from every corner of the world.  Each of these communities has different beliefs about health, illness and medicines.  These beliefs affect the way people in the community think about, find out about and use medicines.

Obtaining information
Many people find it difficult to obtain medicines information.  People who don’t speak fluent English may experience additional difficulties and may have to depend on family and friends for advice.  However, this advice may be harmful, especially if they do not have a good understanding of medical conditions and medicines. 

If their doctor is not familiar with their culture, they may feel uneasy telling their doctor that they are taking any traditional medicines.  This may result in interactions between their traditional and prescribed medicines.

One way that people from different cultural backgrounds can get information that is tailored to their needs to through a Home Medicines Review (see above).  This usually takes place in the person’s home and in a language they can understand.

Campaign
Later this year, the National Prescribing Service (NPS) and the Federation of Ethnic Communities’ Council of Australia (FECCA) are running a campaign to help people from different cultural backgrounds learn about medicines and how to use them safely.

Carolina’s Story
MedicinesTalk spoke to Dr Jay Ramanathan told the story of Carolina, originally from Chile, who took many medicines and was having problems with dizziness and fainting. Her problems eventually resulted in her being admitted to the Emergency Department of the local hospital. 
The hospital referred Carolina for a Home Medicines Review with a Spanish-speaking pharmacist.  During the review, the pharmacist discovered that she was using two brands of the same blood pressure medicine:  one that she had been given in Chile and one she has been prescribed by her doctor in Sydney.  This meant hat she was taking double the recommended dose – the main reason why she was suffering from dizziness and fainting.

The campaign will encourage people

• to ask questions of their doctor and pharmacist
• to keep a list of all their medicines
• to use their medicines as directed
• to store their medicines safely

For more information about the campaign, contact Jackie Stephenson at the National Prescribing Service on jstephenson@nps.org.au

Infoxchange Australia

Infoxchange Australia is now able to provide detailed telephone account audits for community based organisations, in conjunction with Dog and Bone Phone Brokers. The audits ensure that organisations operate their telephone accounts efficiently, are not being charged more than their agreed rates and are receiving competitive market rates, by conducting mini market reviews and tenders.

An Infoxchange audit of one community organisation in 2007 saved them $94,000 over two years, and every audit conducted has resulted in some saving! Call the Infoxchange Australia helpdesk on 1300 306 645 to discuss your specific needs and how little this worthwhile exercise costs.

Roytal

Currently Roytal provide employment for over 100 individuals with disabilities. People have the opportunity to work in a number of manufacturing areas, and to enhance their skills through targeted on and off the job training. For those who are ready and able to take the "next step", Roytal has links with a number of specialist Open Employment services ensure that this vocational option is also supported.

Roytal Offers quality products and services, reliable lead-times, consistent client communication and feedback, formal specification review and approval, guaranteed product or service conformity. The Range includes packaging and Assembly services for clients across a number of industry sectors, Metal fabrication of wire, strip, tube and sheet metal to client specification, Manufacture and design of wire baskets and trays, Wire Brush ware specialising in twisted wire brushes, Collection cans.

To check out this great organisation visit their website at www.roytal.com.au

Arts Access

Arts Access provides access to arts and cultural activity for people who are disadvantaged, including people with a disability. See the Arts Access website at http://www.artsaccess.com.au/ to view their upcoming events and programs, like Art Day South a flagship project for Arts Access having been successfully run for 12 years as a model of "inclusive practice", where the artists work collaboratively with each other and the participants.

Helping girls develop a positive self image

Helping girls develop a positive self image is a tip sheet for parents of girls of all ages, published by the Australian Psychological Society. “Girls get many messages about how they should look and behave…….Some of these messages encourage the sexualisation of girls from a very early age, before they are emotionally and physically ready. You can teach girls to value themselves for who they are, rather than how they look”. For a copy see the Australian Psychological Society website.

WEBSITES

Infoxchange Service Seeker

Infoxchange Australia has developed the Infoxchange Service Seeker (ISS) to allow citizens to be able to access up to date, accurate information on health and welfare support services at any time of the day and night. This service allows you to search for service by area, target group (family, youth, male, female, aged...) and accessibility (after-hours service, wheelchair accessible). The Infoxchange Service Seeker currently contains details on 115,336 government and non-government services and agencies in Victoria. It's updated regularly, so that the information is up to date... well worth a look! (and yes, the GSNV is on there - not only does it list our website, phone numbers and wheelchair accesibility, it even lists the tram numbers if you come in to visit us in person...)

Respite Finder

The Respite Finder and mini-directory are new tools developed to assist families of children with disabilities to find and access respite. It has been developed in the Hume and Moreland areas, but the Respite Finder will be useful for all families in the northern region of Melbourne, and for people of all ages with disabilities. To view the Respite Finder, go to www.respitenorth.infoxchange.net.au then click on Respite Finder. Congrats to Eilis Hughes who developed this excellent resource!

AnSWeR (Antenatal Screening Web Resource)

• Are you pregnant or thinking about starting a family?
• Are you puzzled about the screening and testing being offered to you?
• Do you need to know more about conditions such as Down syndrome for which antenatal testing is offered?
• Have you had a positive diagnosis, and are you now wondering whether to continue or terminate your pregnancy?

Then visiting this UK-based website http://www.antenataltesting.info/default.html may provide you with some answers.

Ability Online Support Network

Since 1991, Ability Online Support Network has been linking chronically ill children around the world! A computer network designed to enhance the lives of children and youth with disabilities or illness by providing an online community of friendship and support. Take a peek at http://www.ablelink.org/public/default.htm

For more information on anything you’ve read here, please contact Penny or Leah in the GSNV office on (03) 8341-6315.