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									               genetic support network of Victoria



                         GSNV UPDATE
                                November 2005


GSNV EVENTS
 Klinefelter Syndrome Information Evening – Wednesday 23rd November
    Dr Phil Bergman from Monash Medical Centre will talk about Klinefelter syndrome. We
    will discuss issues for people affected by Klinefelter syndrome, and participants will
    have an opportunity to share experiences in a non-threatening environment. We will
    also discuss the possibility of starting a Klinefelter support group.

   Date:         Wednesday 23rd November, 2005
   Time:         7pm. We expect to finish around 9pm, but this is flexible
   Venue:        10th floor conference rooms, Royal Children’s Hospital
                 Flemington Road, Parkville
                 (Take the BLUE lifts to the 10th floor and follow the signs)
   RSVP:         to Leah or Deborah on 8341 6315


 Seminar Times
   We’re busy planning a great range of seminars and workshops for 2006, and we want
   to make sure we put them on at times that suit most people. Please let us know
   whether you would find weeknights or weekend seminars better by phoning Leah or
   Deborah on 8341 6315. Thanks!


 Calendar at a Glance
   November 7        GSNV Committee Meeting
               23    Klinefelter Syndrome Information Evening
               25    Aussie Hands Web Site Launch


   *NB – Helen Adams the Executive Officer for the Western Region Disability Network is
   inviting feedback in relation to the Current Disabled Person’s Parking Scheme, with a
   view to making this service better for people with disabilities. If you would like the
   opportunity to have your say about this matter please refer to the enclosed document.
GROUP EVENTS
 Haemophilia Foundation Victoria (HFV) – Christmas Picnic ’05
  The HFV’s Christmas Picnic is on Sunday the 27th of November at Aqualink Nunawading,
   Old Nunawading Swimming pool, Fraser Place, Forest Hill from 12.00 noon to 3.00pm.
   For more information please call Pamela or Michele on (03) 9555 7595 or e-mail
   hfvic@vicnet.au.

 Short Statured People of Australia (SSPA)-Christmas Parties
   The SSPA kid’s Christmas Party will be held on the 3rd of December at Lysterfield Park,
   Horswood Road, Lysterfield. There is a picnic area with BBQ facilities available. The
   adult’s party will also be held on the 3rd of December, at the Noble Park RSL, 1128
   Heatherton Road, from 7pm. Please RSVP to Millards by phoning (03) 9700 1538.

 Heartkids – 2006 Teen and Young Adult Camp!
   Heartkids 2006 Camp is open to young people from all over Australia who are aged
   between 13 and 21, who have a heart condition. The camp is to be held from Friday
   the 20th to Sunday the 22nd of January 2006 in Warburton. For more details please
   contact Kathy or Erin on (03) 9513 9030 or e-mail heartkids@heartkids.org.au



CONFERENCES
   Rett Syndrome – Conference
   The Australian Paediatric Surveillance Unit presents The Rett Syndrome Conference for
   parents. Topics covered will include Diagnosis, Genetics, Epidemiology, Clinical
   Management and the Parent Perspective. The event is scheduled for Monday the 21st
   of November 2005, at the Kerry Packer Institute for Child Health Research, The
   Children’s Hospital at Westmead, NSW 2145. For more information and a registration
   form please contact Rosemary Robertson of the APSU on (02) 9845 3005;
   apsu@chw.edu.au, www.apsu.org.au .
   A workshop for families will be held on Sunday 20th November at the same venue. For
   more information please contact Helen Anderson on (08) 9489 7781;
   rett@ichr.uwa.edu.au

 Neurological Conference 2005- “The Living Experience: Neurological Conditions
   in the 21st Century”.
   The Neurological Conference for 2005, will be held on the 21st & 22nd of November, at
   The Niche, 11 Aberdare Road Nedlands, Western Australia, from 10.00am to 5.OOpm.
   The program for the conference is available at http:/www.cnswa.com. For more
   information or to submit expressions of interest please phone (08) 9346 7533.

 The 7th Annual VALID Self Advocacy Conference – Having a Say 2006
 My Life! My Voice! My Choice!
   The 7th Annual Having a Say Self Advocacy Conference will be held from the 8th - 10th of
   February, 2006, at the Costa Hall, Deakin University, Waterfront Campus, Geelong. For
   further information please contact VALID on (03) 9416 4003 or e-mail
   office@valid.org.au, alternatively visit their website at www.valid.org.au
SEMINARS AND WORKSHOPS
 Pathways Australia: Not-For- Profit Management Seminar Series
 How to Conduct Effective Board/Committee Meetings
  Pathways Australia is hosting a seminar on how to make your meetings more effective
   and productive. The seminar is scheduled for Friday the 25th of November at the CAE
   (Centre for Adult Education), 253 Flinders Lane, Melbourne, from 9.30am to 11.30am.
   For more information please phone Pathways Australia on (03) 9556 5410 or to obtain
   a registration form please visit their web site at www.pathwaysaustralia.com.au.

 Pathways Australia: Not-For- Profit Management Seminar Series
 How to Identify Skill Gaps on your Board/Committee and Recruit New Members
  This seminar will provide you with a “tool-kit” of information and skills that will help your
   organisation create a high performing board or committee. Learn about the role and
   responsibilities of board/committee members; what skills and knowledge your board or
   committee must have; how to approach prospective board members and how to keep
   board/committee members fully involved and interested. The seminar will be held on
   Friday the 25th of November at the CAE (Centre for Adult Education), Room B417, Level
   4, 253 Flinders Lane, Melbourne, from 1.00pm to 3.00pm. For more information please
   phone Pathways Australia on (03) 9556 5410 or to obtain a registration form please
   visit their web site at www.pathwaysaustralia.com.au.

 Loss, Hope & Resilience Workshops
   The loss, hope and resilience workshops are aimed at those who are adjusting to a
   diagnosis of disability or developmental delay. The final workshop series for 2005 will
   be held on Wednesday evenings from 7.30pm – 9.30pm on November 9, 16, 23 and 30
   at the Association office in Armadale. Participants need to be available to attend all
   four evenings. The workshops are free, with a light supper provided. Reimbursement
   for the cost of childcare is available. To register contact Mary Lloyd at the Association
   office on (03) 9500 1232 or 1800 654 013 (rural callers only) or e-mail
   maryl@acd.org.au


GROUPS, SERVICES & ENTERTAINMENT
 Melbourne – A City for People of All Abilities, Disability Action Plan 2005-2009
  The disability Action Plan 2005-2009 outlines Council’s commitment to identify access
  barriers and implement strategies that will enhance opportunities for people with
  disabilities. The policy and action plan has been developed under the following themes
  Equity, Access, Participation, Leadership, Support and Celebration. For a copy of the
  plan phone (03) 9658 9658 or go to www.melbourne.vic.gov.au.

 TADAS – Travellers Aid Disability Access Service
   TADAS assists people with disabilities to improve their independence and to access
   Melbourne. They provide a range of services that can be used singly or in combination
   to meet the needs of people with any type of disability, including personal care,
   independence support, communication assistance, information, social contacts and
   wheelchair services.
   TADAS is very easy to use; you can just drop in when you are in the city. The services
   are free of charge and no referral; assessment or appointment is needed. For more
   information phone TADAS on (03) 9654 7690 or e-mail tadas@travellers-aid.com.au
   you can also visit their website at http://www.vicnet.net.au/~tadas
Family/carer input into review of paediatric orthopaedic services and
  rehabilitation services
  The Royal Children’s Hospital (RCH) is seeking input from families/carers on paediatric
  orthopaedic and rehabilitation services at RCH, with a view to review these services.
  For more information please contact Janice Chan at the Association office at
  janicec@acd.org.au. Families who are unable to contribute to these reviews are still
  welcome to contact Janice Chan at the Association office with suggestions for
  improvements to these services.

2006 Language Disorder Program Handbook
  The Department of Education and Training has now produced a language Disorder
  Program Handbook. The handbook is designed to accompany the existing Program for
  Students with Disabilities Handbook. The Handbook includes the new criteria for
  individualised funding for “Severe Language Disorder and Critical Educational Needs”,
  developed by the Royal Children’s Hospital Education Institute. The new Language
  Disorder Program Handbook 2006 is now available and can be viewed on the
  Department of Education and Training website:
  www.sofweb.vic.edu.au/wellbeing/disabil.htm. To contribute your views on the
  Language Disorder Handbook, please contact Helen Tossell at the Association office on
  (03) 9500 1232 or e-mail helent@acd.org.au

Service Station Driveway Assistance
  Driveway service is offered at a number of locations across Victoria for the benefit of
  people who are not able to fill their car themselves due to a disability, or for medical
  reasons. Whilst there are service stations that offer continuous driveway service, others
  offer a limited service at certain times and some are only able to do so on certain days.
  Most operators are willing to do so on request, simply contact your local service station
  operator to arrange a mutually convenient time. There is a listing of service stations
  that offer driveway assistance at web address:
  www.motor.net.au/VACC/Public/ConsumerTips

Tax Basics for Non-Profit Organisations
  The Australian Tax Office has updated Tax Basics for Non-Profit Organisations. This
  publication contains a comprehensive overview of all the taxation obligations and
  concessions for community organisations and directs you to where you can find more
  detailed information. This publication is important for anyone who is in the position of
  treasurer, office bearer or employee involved in the administration of a non-profit
  organisation. Community groups can view the new version of Tax Basics for Non-Profit
  Organisations at http://www.ato.gov.au/content/33609.htm or order a hardcopy
  version by phoning the ATO on 1300 720 092 and quoting NAT number 7966.

New from the Australian Tax Office Non-Profit News Service No. 0120
  Does your organisation need to update its authorised contact details?
  If your organisation has recently elected new office bearers, it may need to update its
  authorised contact details. This helps us protect your organisation’s privacy and provide
  office bearers with information they need to perform their duties.
  Web: http://ato.gov.au/distributor.asp?doc=/content/62303.htm
 New Multimedia Resources from Carers Victoria
 Surviving the Maze
    Brand new for carers and families of older people: fantastic series of 60 information
   sheets on: Starting caring and being a carer, Dealing with the hospital system,
   considering residential care, Caring for a family member in residential care. These
   information sheets cover all the things that carers and families want to know, but often
   don't know to ask, plus hints and tips directly from carers themselves. See website to
   print off information sheets free of charge and give to a carer you know. Then help us
   spread the word!
   Web: www.carersvic.org.au/BCFC/BCFC.htm
   Web: www.artsaccess.com.au/news/index.cfm?id=296

 Young Carer Resources
   Among the hidden workforce of family carers in the community is a largely
   unrecognised group of vulnerable young people aged up to twenty-five who have a
   significant caring responsibility for a family member or friend with a disability, chronic
   illness, is frail aged or is affected by a mental illness.
   Young Carers Victoria – Is an interactive resource for young carers and is available on
   CD-ROM or to download as a zip file. Just care for us - A documentary highlighting the
   experiences of five young carers. Available in video or DVD format.
   Web: www.carersvic.org.au/InfoSupport/NewCVic.htm#YC
   Email: library@carersvic.org.au

 New Carers Victoria Website
   Check out our new website. It’s cleaner, leaner and much easier to navigate.
   Web: www.carersvic.org.au

   Find Volunteers Free
   The infoxchange offers….Volunteer Seekers Board - free searching and posting of
   volunteer opportunities http://www.volunteer.infoxchange.net.au/

   The Other Film Festival 2006 - Entries Open
   Melbourne's International Disability Film Festival: New Cinema by, with and
   about People with A Disability
   Screens 25-27 August 2006 at Melbourne Museum.
   Now in its second year, Australia's first disability film festival continues to bring
   groundbreaking films from around the world to a Melbourne audience. The festival
   screens exciting work by established and emerging filmmakers. The Other Film Festival
   supports and encourages excellence in filmmaking, accessible cinema and the
   passionate exchange of ideas. And much more!
   The call for entries is now open. Closing date for entries 31 March 2006.
   Email: syoung@artsaccess.com.au with 'OFF2006 subscribe' in the subject line.



FOR YOUR INFORMATION
   Insurance
   Insurance companies require life insurance applicants to inform them if they had
   genetic tests. They may then request the results of those tests. This raises concerns
   that people may avoid a potentially beneficial genetic test so that they do not have to
   provide the test results for life insurance purposes. However insurers cannot ask
   people to undergo genetic tests or induce them to do so by, for example, by providing
   financial incentives.
   Insurers cannot deny private health insurance on the grounds of present or possible
   future health status although there are sometimes waiting times for those with pre-
   existing conditions.

 National Health and Medical Research Council (NHMRC)
   To view recent changes to the NHMRC Governance and Streamlining Research
   Committee Activities please visit web address:
   http://www.nhmrc.gov.au/about/committees/rc/infosheet.htm



GRANTS AND FUNDING OPPORTUNITIES
   If you would like to apply for any of the grants below, please check with the
   organisation offering the grant to ensure that you meet all of their criteria.

 Utility Relief Grant Scheme
   Dept of Human Services (Vic) Community Services & Development provide once off
   assistance for domestic customers who are unable to pay their utility bills due to a
   temporary financial crisis. People wishing to apply to the scheme for assistance must
   contact their gas, electricity or water company to obtain an application form. For further
   information please contact the Dept. of Human Services on (03) 9616 7839.

 St George foundation
   The St. George Foundation provides financial support to charitable organisations
   throughout Australia to help them assist children and young people up to 18 years of
   age with special needs. The Foundation Supports projects which enable children with
   disabilities to participate in innovative programs that enrich their life experiences and
   give disadvantaged children the opportunity to receive the daily comforts and security
   normally afforded by most families. The maximum amount of money provided per grant
   is $2,500 and DGR status is required. For further information please phone Ms Selina
   Wisdom on (02) 9952 2298, alternatively e-mail stgeorgefoundation@stgeorge.com.au
   Closing date for applications: Ongoing (applications are considered once a month) apply
   by mail.

 Disability and Health Self Help Funding Programs Department of Human
  Services Victoria (See COSHG workshop)
  The Department of Human Services is offering small non-recurrent operating grants for
  self help groups which support people with either a disability or a chronic illness
  through the 2005-06 Disability and Health Self Help Funding Programs.
  To be eligible for funding the self help group must be:
   supporting people living with a disability; or
   supporting people living with a chronic illness; and
   be non profit making; and
   be controlled by its members; and
   have an ongoing membership; and
   not be eligible to apply for other government grants.
  Small operating grants will be provided for 1 year and are not recurrent.
  Statewide, regional and local groups may apply.
  Applications close Friday 11 November 2005
   Funding guidelines, application forms and further information on the two Programs can
   be obtained via the Department of Human Services web site:
   www.dhs.vic.gov.au/selfhelp

 The Wilson Dilworth Foundation
   Community Services & Development grant to give financial support to groups in
   Australia committed to assisting the disadvantaged, including the frail aged, the
   intellectually and physically disabled, vulnerable youth, the indigenous and new settlers.
   Funding: Grants of between $1,000 and $4,000 are envisaged
   Closing date: 31st December
   Ph: Mr Bill Clancy, The Secretary 9642 1200
   Web: http://wilsondilworth.com.au

 Community Grants Program – RegionalOne Credit Union
   Community Services & Development grant to encourage creative and innovative
   thinking in the non-profit/community sector. RegionalOne Credit Union's Community
   Grant Program aims to empower people within Regional Victoria to realise their
   potential, producing extraordinary results for their community. Ideally it is seed funding
   to encourage and support the development of innovative community programs. Grants
   are available to groups throughout the region and will benefit members in Bendigo,
   Castlemaine, Kyneton, Maryborough, Sunbury, Echuca, Kerang, Mildura, Ballarat, Colac
   and surrounding districts organisations, clubs or community groups that apply must be
   a non-profit incorporated organisation.
   Various funding amounts apply by mail
   Closing date: 31 December 2005
   Ph: North West Country Credit 5443 0000
   Web: www.regionalonecu.com.au/category.asp?category_id=775

 William Buckland Foundation - ANZ Charitable Trusts
   Community Services & Development grant. The Foundation will strive to identify,
   research and support initiatives that have the capacity to make a lasting, significant and
   positive impact on the wellbeing of the community.
   Various funding amounts, with grants less than $10,000 not preferred.
   Closing date: 1 January 2006 Apply by mail, email
   Ph: 9273 2701 Freecall: 1800 808 910
   Email: charitabletrusts@anz.com
   Web: www.anz.com.au/australia/charitabletrusts/Guidelines.asp

   Cheap PC for your group
   Beat the Christmas rush and order your Green PC now! Green PC refurbishes
   Used computers and sells them at affordable prices to individuals on low
   incomes and community organisations. Prices start from $150 for
   internet-ready PCs. Visit http://www.greenpc.com.au to find out more.



RESEARCH
   Communicating genetic information in families
   Have you or your child been diagnosed with a genetic condition? Were you encouraged
   to tell your family members about this genetic information? Do you have any
   experiences of this you would be willing to share in an interview?
Laura Forrest is doing a Ph.D looking at people’s experiences of telling family members
about a genetic condition. Laura is enrolled through the University of Melbourne and is
based at the Murdoch Children’s Research Institute, in Genetics Education and Health
Research.

Laura can do the interviews either at the Royal Children’s Hospital or in your home, and
expects the interview to take about an hour. If you would like more information, please
contact Laura at laura.forrest@mcri.edu.au or on (03) 8341 6209. Laura is also happy
to speak to support groups about her research.



REMINDER - Next Committee Meeting
Saturday, 3rd December 2005
All members and interested parties are very welcome to attend our meetings.

For more information on anything you’ve read here, or to have your group’s event
advertised in the GSNV Update, please phone Leah or Deb on (03) 8341-6315 or e-mail
info@gsnv.org.au

Want to get this Update every month? Not on the GSNV mailing list? Contact Leah or
Deb on 8341 6315 or email info@gsnv.org.au
The WRDN would like your comments
about the Disabled Persons' Parking
Permit Scheme.
The WRDN will make a submission based
on the feedback of all our members
Please email me or ring and talk to me on
9687 7066
By Friday 18th please. Thanks H


REVISED CODE OF THE DISABLED PERSONS' PARKING SCHEME

The Victorian Road Rules currently provide for a scheme that is designed to regulate
parking and ensure the opportunity for people with a disability to have an easier
access to services and facilities throughout the state. This scheme, entitled "The
Disabled Persons' Parking Scheme" is administered by councils in accordance with
the Code that sets out the regulations that govern the scheme.

As a response to requests from councils and disabled motorists' groups, VicRoads as
an agency responsible for the Code, initiated and spearheaded the review. The
review was undertaken in response to the perceptions that disabled persons' parking
spaces are frequently being misused by people who do not appear to have a
disability, thereby making it difficult for legitimate permit holders to access the
spaces. There were also concerns about forgery, as well as the proliferation of
permits as the current eligibility criteria have made it easy to obtain permits. Older
people, in particular, many of whom do not have a disability within the eligibility
criteria, make substantial calls on the scheme.

As a result, a working party comprising the representatives of VicRoads, Victoria
Police, the Municipal Association of Victoria (MAV), local government, disabled
persons' groups and the Australian Medical Association was re-convened in 1999 to
monitor and revise the scheme. VicRoads acted as the convener of the working
group.

Broadly speaking, the major changes to the revised scheme include the following:

" all applications are determined in an equitable manner;
" tightened eligibility criteria to cover only those people who either need a wider
parking space to access their vehicle or are severely restricted in the distance they
can walk;
" revised application forms for individuals and organisations, both of which are in the
form of a Statutory Declaration;
" new conditions to restrict the ability for ineligible family members and others to
misuse permits;
" a set of common disability indicators to improve enforcement.

The revised Code was gazetted on 4 July 2002 but later withdrawn as a result of
concerns raised by some disabled persons' groups in relation to privacy issues. These
concerns have since been addressed and necessary changes incorporated into the
revised Code. In addition, further legal advice has been sought on the wording of the
proposed Code, which resulted in text changes but did not alter the intent of the
Code.

As the lead agency on the working party, VicRoads has now finalised the text of the
revised Code. There have, however, been significant delays in the gazettal of the
Code. The MAV has had discussions with the State Government regarding the way
forward on this issue. At the same time, the MAV is concerned about the lack of
understanding of the potential impact that the proposed changes could have on the
existing permit holders, as well as the lack of involvement of some key advocacy
groups representing people with disabilities and older people.

The MAV is now in the process of developing a regulatory impact statement and this
will involve further consultation work with a broad range of stakeholders in the
community and has appointed Strategic Essentials Management Consultants to
undertake this work. The specific areas we invite your feedback on are as follows:


Community Sector Feedback :
1. What have been your experiences with the current scheme? These can be
expressed in terms of:
" General issues and concerns.
" Weaknesses and strengths.
" Management of the issuing of permits by local councils.

2. What essential changes need to be made the current scheme and how it's
managed? Specifically:

a. What changes would you like to see take place?

b. How would these changes be of benefit to you?

c. What would be the impact if these changes were not undertaken?

3. In your view, what can local councils do to:
a. Reduce the misuse of the disabled person parking scheme?
b. Improve the access of parking spaces to those who need it most?
c. Improve the efficiency and ease in issuing/managing permits? Helen   Adams
Executive Officer
Western Region Disability Network
Ph 9687 7066/0422 3044 25

								
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