Accord 2004 Winter - SCI Resources Library

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No. 5 Winter 2004
ISSN: 1448-4145
Estimated Readership: 10,000
Spinal Cord Injuries Australia
ACN 001 263 734
ABN 93 001 263 734
Incorporated in NSW
1 Jennifer Street, Little Bay NSW 2036
Tel:
02 9661 8855
1800 819 775
(for consumers outside Sydney)
Fax:
02 9661 9598
Email:
spinalcordinjuries@spinalcordinjuries.com.au
Website: www.spinalcordinjuries.com.au
Level 1, 184 Bourke Road, Alexandria NSW 2015
Tel:
02 9693 1666
Fax:
02 9669 1761
TTY:
02 9669 5812
208 Corrimal Street, Wollongong NSW 2500
Tel:
02 4225 1366
Fax:
02 4225 1933
Address correspondence to:
The Editor
Accord
PO Box 397
Matraville NSW 2036
Journal of Spinal Cord Injuries Australia
Patron:
His Excellency Major General Michael Jeffery AC CVO MC
(Retd)
Governor-General of the Commonwealth of Australia
CONTENTS...
2
From the CEO
3
From the Chairman
4
Searching for a Cure
6
Japanese Perspective for Disability Employment
Services
7
Greg Moran – Lights, Camera, Action!
9
After Over 30 years, AQA Lives On
10
Collaroy: a Community Effort
11
What’s the Good Oil on Fat!
12
Goods and Services
13
Aussie, Aussie, Aussie!
15
Access to Entertainment Venues – Options,
Opinions, Codes and Standards
17
Canadian Access Challenge
Advertising Manager: Greg Killeen
19
New Publications
Design: Elizabeth Kemp
20
The Role of the Consumers’ Telecommunications
Network
21
Taxi!
22
Regional Round-up
25
National Round-up
27
Miss Megabyte
28
Computer Mailbox
29
Making Connections Update
29
Classifieds
30
New Technologies
Editorial Committee
Paul Versteege (Editor), Greg Bergan
Elizabeth Kemp, Greg Killeen, Monique King
Margaret Noonan, Jane Robson, David Stern
Printer: Macdonald & Masterson Printing Pty Ltd
Accord Contributions
Spinal Cord Injuries Australia always welcomes articles
for Accord. Please feel free to send in your contribution.
Articles will be published at the discretion of the Editor.
The opinions expressed in Accord are not necessarily
those of Spinal Cord Injuries Australia or of the Editor.
They are published to create a forum for debate on
issues related to people with disabilities. Original
material in Accord can be reproduced only with
permission from the Editor. Donations towards
production costs are greatly appreciated.
Information in Accord is furnished solely as a guide
to the existence and availability of goods or services.
Accord has neither the staff nor the facilities for testing
and evaluating any of the services or items and therefore can assume no responsibility for the effectiveness,
safety or quality of any such items or service.
Accord is funded by the Department of Family and
Community Services and the Department of Ageing,
Disability and Home Care.
Front cover: Greg Moran on the set of Backtalk.
FROM THE CEO
we deserve their support. impact certainly
delivers that message.
impact is being mailed to our friends and
supporters and will be a great means of
introducing our organisation and its services
to many other people. Accord will continue
to be published, providing the much needed
disability specific information and articles
that many of you have requested in your
feedback to us. Of course, if you have any
comments or requests on either publication,
please forward them to our editor as we value
your input.
Greg Bergan
Enclosed with this edition of Accord you will
have found a copy of our brand new supporter
newsletter, impact.
I would encourage all of you to read and pass
on your copy of impact to your friends and
family, as we can certainly do with their
support. You can obtain more copies by
contacting our friendly staff at the Little Bay
office on 02 9661 8855 or for those outside
of the Sydney metropolitan area on 1800 819
775 or from www.spinalcordinjuries.com.au/
publications.
Apart from letting people know about what
we are doing through communications and
events, SCI Australia has been busy planning
for the future. Efforts have been directed
towards enhancing service delivery wherever
possible. Over the next twelve months,
members should begin to see new
developments in many of the areas we have
traditionally been involved in.
I am very excited about the introduction of
impact because it is Spinal Cord Injuries
Australia’s next step in involving the
community in the great work that we do. In
past editions of Accord I have written about
the need to have the community understand
who we are, what it is that we do, and why
Advocacy has always been a strong part of
our identity as an organisation and this will
continue to be the case into the future.
Individual advocacy makes up a large
proportion of our Community Support &
Individual Advocacy Officer’s role and it has
been pleasing to see a greater level of
interaction between Lesley Davies and the
SCI Workforce team. Employment and
related Centrelink benefit issues unfortunately
provide a seemingly endless stream of
advocacy issues.
Being in touch with so many people at the
grass roots level obviously puts us in a good
position to escalate any issues that emerge as
a systemic problem. It is in this area that we
are perhaps making the biggest changes. With
the recent appointment of Paul Versteege as
our new Policy Coordinator, a greater
emphasis will be placed upon solid, well
founded research and the subsequent
development of policy statements on all
manner of issues related to physical disability.
The aim is for our SCInfo team to work
closely with other advocacy organisations,
peak bodies and government, providing
resources, information and expertise in a
collaborative approach to solving ongoing
issues.
Other areas to which SCI Australia remains
committed are the provision of our vital Peer
Support and Regional Services. Our dedicated
team of Peer Support Officers have helped
many people over years past come to grips
with their injury and move back into
community life. Our talented Regional Staff
have also received a boost, with Alex Traill
managing our Regional Services from the
Illawarra Office. Alex and his team are doing
a great job at covering so many bases and we
will continue to focus on raising our profile
and coverage in regional areas.
In future editions of Accord you will be
introduced to our staff so that you can put a
face to their names and hear more about what
it is that they are doing on behalf of the
community in which we serve.
n
Spinal Cord Injuries Australia Board of Directors - 2004
President
Chairperson
Director
Director
Director
Director
Director
Monique King *
Brian Newton OAM *
Peter Carmichael *
Michael Godfrey-Roberts
Richard Klinger *
Jennifer Lee *
David O’Brien *
02 9519 4378
02 9349 4608
02 6643 5888
02 9639 3914
02 9314 2759
02 4225 8026
02 9349 8121
* Denotes a person with a disability
2
ACCORD WINTER 2004
0408 882 302
0413 327 500
0429 916 428
0405 356 920
monique.king@optusnet.com.au
wheelabout@optusnet.com.au
petcar52@bigpond.net.au
mgrr@optushome.com.au
equibuilt@primus.com.au
jlee@shoal.net.au
david.o’brien@audit.nsw.gov.au
FROM THE CHAIRMAN
D
iscussions are still being held with the
Paraplegic and Quadriplegic Association of NSW over a proposed merger with
our organisation. Members of Spinal Cord
Injuries Australia overwhelmingly voted
“Yes” to a final merger proposal on 6 April
2004 that set out a number of conditions for
a merger to go ahead, including a date on or
by 1 September 2004 for the merger to take
effect. This timeframe was previously agreed
to byDirectors
representing
both
organisations in the negotiation process
The final merger proposal was forwarded
to the Board of the Paraplegic and Quadriplegic Association of NSW on 7 April 2004
with a request that, if their Board supported
a merger, the proposal needed to be voted
on by their members before 1 July 2004.
This was necessary to allow time to prepare
for the ultimate merger.
It appears at this stage that the proposal will
lapse as the Board of the Paraplegic and
Quadriplegic Association of NSW has not
called an Extraordinary General Meeting of
their members to vote on the merger. A new
financial year is soon to commence and
strategic planning for the next three years is
close to completion.
Whilst the prospect of a merger will need to
be put on hold for now, the Board of Spinal
Cord Injuries Australia will continue to
pursue the possibility of a merger with the
Paraplegic and Quadriplegic Association of
NSW over the coming years. Merger
updates will be available on the Spinal Cord
Injuries Australia’s website.
Board elections are looming for Spinal Cord
Injuries Australia and members are asked to
consider becoming a Director. If you have
expertise in advocacy, marketing, finance or
any other area of the organisation’s
operations, your nomination would help
ensure that the Board has the appropriate
skills to direct this vital organisation.
Perter Carmichael, a long standing advocate
and a person with diverse business
knowledge, will be retiring from the Board
this November. His expertise will be greatly
missed but an opportunity will then exist for
a member to seek election and for other
members to contest positions of Directors
required to stand down by the Constitution.
Spinal Cord Injuries Australia has a Board
of seven Directors (including the President)
who are elected for a two year term. Three
Directors stand down at the Annual General
Meeting in November of each year and the
President also stands down every second
year.
The President is elected by the members and
reports at least annually to the membership.
The President acts in an ambassadorial
capacity on behalf of the organisation and
provides input into membership and
advocacy dealings.
The Board Chairman is elected by the
Directors themselves after each Annual
General Meeting and is primarily responsible for managing Board affairs and for
liaising with the Chief Executive Officer.
Board meetings are currently held on the
fourth Thursday of each month and Directors
may participate in Board Meetings by
teleconference, although they are
encouraged to attend in person whenever
possible.
The Board of Spinal Cord Injuries Australia
has adopted the ten (10) essential corporate
governance principles as recommended by
the Australian Securities and Investments
Commission. The ten (10) principles are:
•
•
•
•
•
•
•
•
•
•
Lay solid foundations for management
and oversight
Structure the Board to add value
Promote ethical and responsible
decision-making
Safeguard integrity in financial
reporting
Make timely and balanced disclosure
Respect the rights of members
Recognise and manage risk
Encourage enhanced performance
Remunerate fairly and responsibly
Recognise the legitimate interests of
members
Directors are also required to take on the
following key responsibilities:
-
To bear the ultimate responsibility for
the overall management and legal
requirements of the organisation and,
as a Board, act as the ultimate policymaking body and goal setter of the
Brian Newton
organisation
-
To work towards ensuring the future
viability and growth of the
organisation’s services and the
maximum outcomes for members and
consumers
-
To monitor the achievement of the
organisation’s policies, goals and
strategic directions
-
To support and monitor the
employment performance of the Chief
Executive Officer
-
To act with care and diligence in
carrying out the role of a Director
All Spinal Cord Injuries Australia members
eligible to vote will receive nomination
forms in September 2004 for the 2004
Annual General Meeting, which will be held
in November 2004. Nominate as a Director
this year - your expertise will benefit present
and future operations.
Members will also be asked to vote on a
proposal at the 2004 Annual General
Meeting to allow two “Invited Directors”
with particular expertise to serve on the
Board for a two year term, thus increasing
the Board’s numbers to nine. These additional Directors would not only add value
to the Board’s decision making but would
enhance the organisation’s public image.
Full details will be provided to members
eligible to vote when Business on Notice is
circulated for the 2004 Annual General
Meeting.
n
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 3
RESEARCH
Searching for a Cure
Lakshmi Bangalore, Ph.D.
Copyright 2004, Paralyzed Veterans of America, by permission of PN/Paraplegia News.
A
t the Center for Neuroscience and
Regeneration Research, basic—yet
complex—questions have captivated
researchers’ interest for the past two
decades.
Located at the VA Medical Center in West
Haven, Conn., the Center for Neuroscience
and Regeneration Research was established
in an effort to help—through biomedical
research—people with nerve and spinal cord
injury (SCI). The Paralyzed Veterans of
America (PVA), an ardent supporter since
the center’s inception in 1988, has played a
pivotal role in its success as a world leader
in research on restoration and preservation
of neurological function.
The facility’s scientists include molecular
and cell biologists, biochemists, electrophysiologists, clinical neurologists, imaging
specialists, and surgeons with links to the
nearby Yale University School of Medicine.
Although they come from a wide range of
scientific disciplines, these investigators
have a common goal: to understand the
fundamental basis for conduction disorders
and to discover effective treatments that will
improve the lives of millions of people
worldwide with SCI, multiple sclerosis
(MS), and related disorders.
Using state-of-the-art technologies,
researchers look at neurons up close, at the
molecular and cellular levels, for clues on
how damaged nerves can be coaxed to
rewire and regain function, why people with
nerve injury experience abnormal pain, and
what mechanisms trigger further nerve
damage in these individuals. These basic,
yet complex, questions have captivated their
interest for the past two decades, providing
the thrust for experimentation. They record
electrical impulses from nerve fibers, study
the molecular ‘batteries’ that produce them,
probe the genome (complete set of
chromosomes) for clues about the origins
of neuropathic pain, and test a variety of
cell-based strategies for their ability to repair
damaged nerves. Here, briefly, is a
description of some of the ongoing studies
4
ACCORD WINTER 2004
at the Center for Neuroscience and
Regeneration Research.
myelin as if it were foreign, short-circuiting
signal transmission.
Restoring Communication
In an effort to repair ‘demyelinated’ nerves,
the center’s researchers take on the role of
electricians and test a variety of strategies
to restore insulation around nerve fibers.
They extract myelin-producing cells from
various parts of the body, grow them to large
numbers in laboratory dishes, surgically
transplant the laboratory grown cells into
injured animals, and look for signs of
recovery. Among the different types of cells
used are olfactory ensheathing (cells lining
inside of the nose), Schwann (those that
insulate peripheral nerves), and genetically
modified cells that resist immune rejection.
The researchers already have shown that
insulation and transmission of nerve signals
can be restored when myelin-producing cells
are introduced into injured animals. Recently
they demonstrated that stem cells extracted
Our ability to flip the pages of this magazine,
walk up and down the stairs, feel the
discomfort of a paper cut, or yelp with pain
from a stubbed toe depends crucially on
communication of signals between the brain
and the rest of the body. Like a high-voltage
cable leaving the transmission tower, the
spinal cord—a bundle of nerve and support
cells—carries signals to and from the brain
and serves as the primary channel for this
communication. And just as damage to a
power line breaks the circuit and disrupts
power supply, the injured spinal cord, unable
to transmit signals, disrupts movement and
sensation in an injured person.
Although damage can be in the form of
complete severance or separation of nerve
This is a cross section of a bundle of nerve fibers as seen through an electron
microscope. In (a), the dark outlines represent myelin, the insulating sheath
around nerve fibers. Photo (b) shows a higher magnification of the same,
showing layers of insulation around nerve fibers.
fibers from the circuit, it is more commonly
damage to myelin, the insulating sheath
surrounding nerve fibers, that is cause for
disability. In the latter case, although the
connections are well and intact, the nerve
fibers, like electrical wires with damaged
insulation, are unable to transmit signals.
Damage to the insulation also takes place in
MS, when the body’s immune system attacks
from adult bone marrow are also capable of
repairing damaged nerves, when injected
directly into the injury site or intravenously.
Exciting as they are, these studies remain to
be reproduced successfully in human clinical
trials, and every effort is being made to
rapidly move forward in that direction.
Preserving Function
Although MS is typically associated with
loss of myelin, it is well known that the
primary cause for fewer remissions (i.e.,
permanent damage) is destruction of nerve
fibers. In an attempt to slow disease
progression and preserve function in people
with MS, the center’s researchers performed
detailed studies that helped identify the
molecular chain of events that lead to
destruction of nerve fibers.
These studies demonstrated that entry of
massive levels of calcium into the injured
nerve cell ultimately leads to its death. With
knowledge of the molecular routes for
abnormal calcium influx, researchers then
applied drugs that target key molecules in
the path to destruction and were the first to
demonstrate it is possible to protect nerve
fibers from further damage in MS. These
studies performed initially with nerve cells
in laboratory dishes and subsequently in
experimental animals have led to an
increased understanding of the fundamental
basis for nerve damage and to the planning
of a first in-human clinical trial of
neuroprotection in people with MS. Similar
studies to protect neurological function in
people with SCI are also underway.
Questioning Pain
Neuropathic pain, characterized by exaggerated or excruciating pain in response to
normally painless stimuli, severely affects
the lives of nearly 50% of people with MS
and SCI. In contrast to normal pain that goes
away as damaged tissue heals, neuropathic
pain persists because injured nerves
malfunction and signal pain even when paincausing factors are not present.
In their effort to understand this phenomenon, the center’s researchers study
molecular batteries (sodium channels)
present on the nerve-cell surface to generate
and transmit signals. About a dozen sodium
channels are known, each with its trademark
signal and place of operation.
Studies at the center demonstrated that the
placement of sodium channels within the
body is drastically altered after nerve injury,
allowing for improper signals of pain to be
generated and transmitted. This finding has
opened the door to myriad other questions
such as what triggers the altered placement
of sodium channels, how the misplaced
channels can be silenced without affecting
the others, and what molecules serve as
accomplices in this malfunction. In their
search for answers, the investigators have
already screened tens of thousands of
molecules, identifying many potential
targets and strategies to alleviate pain.
With improved understanding of the
molecular players that produce pain, and
innovative strategies to target them, better
treatment for pain in MS and SCI will
eventually follow.
Channelopathy
Three years ago, the center’s researchers
demonstrated abnormal sodium-channel
behavior within the brain in MS, identifying
a new pathology in this disease. In their
studies, performed on rodent models of MS
and autopsies of human MS tissue, they
showed that the sodium channel type Nav
1.8 is erroneously produced in the
cerebellum—a region of the brain that
controls balance and coordination. Presence
of these channels within nerve cells of the
cerebellum alters the way they signal,
possibly affecting the way they behave
within that region of the brain.
This identification of a previously
unrecognized pathology in MS has opened
up the opportunity of using molecular
pharmacology to ‘retune’ the nervous system
in MS. Studies on the contribution of
improperly placed channels to clinical
symptoms will enable identification of
strategies to block it, and ultimately lead to
development of new therapies that will
improve balance, coordination, and visual
function in people with MS.
Looking Ahead
The field of neuroscience and regeneration
research is advancing at a rapid pace.
Research will ultimately translate into cures
that will greatly improve the quality of life
in people with nerve dysfunction. In its
search for cures, the center has also trained
more than a hundred graduate students,
postdoctoral fellows, medical students, and
visiting scientists, and is thus helping launch
the next generation of researchers in the
field. These investigators from countries
around the world including Great Britain,
Germany, Sweden, Israel, Switzerland, Italy,
Japan, and France continue to build the
numbers and discover and create new
knowledge that will ultimately help win the
battle against SCI and MS.
Lakshmi Bangalore, Ph.D., is scientific
liaison officer at the PVA-EPVA Center for
Neuroscience Research, VA Rehabilitation
R&D Center for SCI and MS, Yale
University School of Medicine, in West
Haven, Conn.
n
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 5
EMPLOYMENT
Japanese Perspective for
Disability Employment Services
Maya Verma, Employment Service Manager
S
pinal Cord Injuries Australia recently
hosted visitors from a Japanese
disability
employment
service.
Coordinated by the Sydney based Australia
Japan Health Care Network, the tour
became an enlightening experience.
The Australia Japan Health Care Network
was contacted by the Japanese ‘Workshop
99’ based in Osaka. ‘Workshop 99’ wished
to visit Spinal Cord Injuries Australia to
learn about support and training for people
living with a physical disability outside of
Japan.
The Director of Australia Japan Health Care
Network, Chizuru Greenup Kuramochi
had clearly made an impression.
Chizuru interpreted, “We do not have group
housing in Japan. People with disabilities
must live with their families. The houses
in Japan are very limited in size and this is
difficult. They want to go back to Japan and
look at a way to establish something similar
to what they have seen today.”
During their tour of the SCI Geo and Data
Service the visitors expressed their impressions of the service size, training, and
equality between staff both with and
without a disability in performing high end
data entry and analysis. The SCI Geo and
Data service provides full and part time
with severe disability to enter the employment market. This is why ‘Workshop 99’
came into existence.
Chizuru translated for Ms Eiko Hata,
“Workshop 99 was originally formed in
April 1999 and was authorised as a Workshop (NOP) in March 2003. We are still
young.”
Relatively new they may be, but ‘Workshop
99’ generates progressive thinking. In addition to supported employment it promotes
public disability awareness, advocates for
human rights, and encourages participation
in community life. Its vision translates as,
“Contribution to make a better society
where everyone is embraced.”
Workshop 99’s activities include: product
and rehabilitation production; sales and
display; community salon operation; public
seminar provision; advocacy for every
independence; physical aids; introducing
health food products and supplements;
home based services; and study groups.
This visit demonstrated that there are
indeed strengths in the Japanese system that
may improve services available in
Australia. The Japanese health care and
whole person approach appeared completely holistic in practice and not just a
policy ideal.
Computer Coding Manager, Cathy Willis (1st from left), and Employment
Service Manager, Maya Verma (4th at rear from left) with the Workshop 99
visitors at SCI Australia’s Alexandria office.
commented on a trend shift in Japanese
information seeking tours from aged care
provision to focusing on meeting with
disability organisations for an international
perspective.
The five Japanese visitors and Chizuru
remarked enthusiastically about their
previous site visit to the SCI Australia
group residential house. Residential
Services Manager, Katrina Jolley, and the
people who have made their home there,
6
ACCORD WINTER 2004
employment and training for people with
disabilities in the area of data interpretation
and processing, computer mapping and
office skills and is headed by Cathy Willis.
During the visit to SCI Workforce one
visitor living with cerebral palsy commented, “You find work for people with
severe disability. This is difficult in Japan.”
Her co-workers commented that she was
intelligent and skilled in many areas but in
Japan it seems more problematic for people
Further to this the Japanese wheelchair
technology captivated staff attention, and
the government program of equipment provision is impressive.
The core of international disability information our employment services have had
exposure to focuses on systems from
America and Canada. These have been of
value. However, perhaps it is time to
emulate if nothing else, the open curiosity
of the Japanese to seek examples from a
wider diversity of countries.
It is difficult to ascertain who learnt more
from the tour, the ‘Workshop 99’ visitors
or SCI Australia Employment Services. n
PERSONAL STORY
Greg Moran – Lights, Camera, Action!
Greg Killeen, Information Officer
Aspiring actors are always looking for that
big break to give them experience and
exposure. Some of the actors have since
appeared in Australian television and film
productions, despite having been in my
films.”
Begging for It was followed by Backtalk,
which won best short picture at the
Canadian Picture This film festival for
films with a disability theme. In Backtalk,
the main character explores the possibilities
for a person with quadriplegia to practise
self-defence, but is lucky to survive basic
training.
Greg Moran directing car scene
H
ow does this grab you for a disabilitythemed short humorous movie? A
person with quadriplegia doing a selfdefence course, mercilessly hurled to the
ground.
Film-maker and scriptwriter Greg Moran,
himself a person with quadriplegia after a
maul collapsed on him during a Year 10
rugby match, makes no bones about it, “If I
can take the mickey out of people with
disabilities, it’s a good thing.”
or somewhere, and people start giving you
money. What do you do? You don’t want
to embarrass them. They mean well!”
Greg’s very modest about getting this short
movie produced, “I funded and produced
it, but I only had to pay the cameraman for
wear and tear on his equipment. The actors
worked for free, well lunch anyway.
“Making Backtalk was much easier,
because this time round I actually knew
what I was doing. For a start, I knew the
film scene and the people much better than
before.
“My focus now is on feature films. I don’t
plan to do short films anymore. I would like
to make films about universal ideals. A film
should allow the audience to empathise
with the characters. When I watch a film, I
want to have a life experience through the
characters.
(continued next page)
Interested in art and writing from a very
early age, Greg had not planned to be an
artist or a writer, let alone a film-maker. But
he has taken advantage of the opportunities
that have come his way.
That’s how he came to make two short films
Begging for It and Backtalk. In Begging for
It, a person with quadriplegia is waiting by
the side of the road to be picked up by his
wife. Well-meaning passers-by put money
in his lap, much to the annoyance of a
professional beggar nearby.
Greg co-wrote the script for Begging for It
with a friend, Paddy Donohoe.
“Begging for It is based on my own experiences. You’d be waiting in a shopping centre
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 7
(continued from previous page)
“I like making black comedies because it’s
a good way to present more serious issues.
The best reaction is where half the audience
laughs out loud and the other half wonders
why they are laughing.
“Favourite films of mine are American
Beauty, Pulp Fiction, Thin Red Line, Dead
Man Walking, A Bronx Tale, Adaptation,
Shine, and series like The Office.
“At the moment I have two projects, both
for feature films. One I have provisionally
titled Asylum. It’s about who we are as
Australians, how we see the world, our
values, multiculturalism and the ironies
involved.
“The other film is Rasputin. It’s about a
serial killer and compares Catholicism with
new age spirituality.”
Greg made his first short film in 1998. He
sustained his injury in 1983. What
happened in the intervening fifteen years?
“After five months at Royal North Shore
Hospital Spinal Unit, I moved to Ashton
House in Maroubra, where I lived for three
years until I finished high school in 1987.
This was a great experience but longer than
planned. During that time my parents were
building a house near my school that took
a couple of years to build so I moved there
after I finished school.
“I wasn’t much of an academic at school. I
was more into playing sport but I always
did a lot of reading and wrote short stories.
I wasn’t sure what I wanted to do careerwise, before or after quadriplegia.
Greg Moran (left) and Matt Brunner editing Backtalk.
“I initially used a chin-control electric
wheelchair for mobility, but after a couple
of years I built up enough strength in one
arm to operate a hand-controlled electric
wheelchair.
“In Year 11, a teacher showed me some
paintings done by mouth and foot painters.
He thought this might be the sort of thing I
would want to do. I did some paintings
holding a paintbrush in my mouth and did
a self-portrait as my major work for Art for
the Higher School Certificate.
“I then did a Bachelor of Arts at Sydney
Uni. I did Fine Arts, English and History,
but Fine Arts was purely theory, very dry. I
enjoyed English and writing, though.
“I took forever to finish my degree, from
1987 to 1991. After that, I did short courses
in short story writing, novel writing and
script writing which I decided to pursue. I
wrote some scripts and I did more painting
and did art courses, but these courses
weren’t always right for me. I mean, I
wanted to develop professionally and these
courses were more for recreational artists.
“I then did a diploma in colour and design
before a friend introduced me to the Mouth
and Foot Painting Artists. I was about to
apply for a full-time course in script writing
at the Australian Film, Radio & Television
School near Macquarie University in
Sydney.
“As I couldn’t juggle both I decided to
accept a student scholarship from the
Mouth and Foot Painting Artists thinking
that if I got good at this I could eventually
do it to support myself while writing. I then
largely put my writing on hold while I had
8
ACCORD WINTER 2004
private art lessons for 3 years although I
still did some film short courses at
Australian Film, Radio and Television
School.
The Mouth and Foot Painting Artists
scholarship was great, because, at the time,
they paid you a basic wage of around $200
per week and if you painted something
suitable to be turned into a card, they would
buy the painting off you for, say, $500.
“In 1999 I moved to Murrumbateman, near
Canberra, to manage Doonkuna Estate, our
family’s winery, where I was also doing a
degree in wine growing by correspondence
at Charles Sturt University in Wagga
Wagga.
“In 2003 though I realised that if I wanted
to be a successful film-maker I needed to
focus solely on it, so I decided to leave the
winery and return to Sydney. During this
period I had been painting less and less and
this year I resigned from the Mouth and
Foot Painting Artists as well. I think they
would have been happy to see me go
because I was probably their least
productive artist.
“I’m still doing occasional film and acting
courses at Australian Film, Television and
Radio School and at the National Institute
of Dramatic Art, but I’m now mainly
researching and writing and hoping to
eventually develop these scripts into feature
films.”
Greg Moran can provide copies of his short
films so contact SCI Australia on 02 9661
8855 and we will forward your contact
details.
n
FUNDRAISING
After Over 30 years, AQA Lives On
Matt Lattin, Business Development Manager
L
ast year our organisation made a number
of changes, the most significant of these
was changing our name. The Australian
Quadriplegic Association, or AQA as most
of us knew it, became Spinal Cord Injuries
Australia (SCI Australia). As Russell
Chudleigh always says, ‘words can paint a
thousand pictures’ and the phrase ‘spinal
cord injuries’ explains a lot more than the
word ‘quadriplegic’ when mentioned in
relation to our businesses and services.
What you may not know is that the AQA
brand lives on in the form of our Field
Appeals street collection division. AQA is
very much a division of SCI Australia from
both the legal side and more importantly the
family side of SCI Australia. From Field
Appeals we send out our employees to
shopping centres, hotels and clubs, door-todoor and of course we still have the street
collections.
We have kept the AQA brand for very
specific reasons. Most importantly, we have
been collecting under the AQA banner for
many years and the general public recognises
our logo. Changing the brand would threaten
our ability to raise funds from an increasingly
sceptical public. We are not willing to take
that risk. We are however in the process of
updating our uniforms which includes new
AQA branded shirts with the message
‘Supporting the Spinal Cord Injury
Community’ on the back. Works a treat, for
just the other day one of our collectors was
chased down the road to be given $10 after
the person had seen the message on the back
of their shirt. But as you are aware not
everyone is compelled to chase us to donate
money, we must get out there and create a
presence to constantly remind people of the
need to donate.
is high there is a huge opportunity for us if
only we had more collectors. We could triple
our employees in field appeals and still not
reach everyone in Sydney.
Most of our 35 collectors work in the
Sydney region. We also have a few
collectors in the Central Coast and
Newcastle regions and in the Illawarra.
From time to time our employees like to
venture out into rural NSW to do a country
run.
There was a time when we had over 60
collectors. Our history shows that the more
collectors we have the more funds we raise.
We have a number of employees who work
4 or 5 days a week (4 hour shifts) but the
majority work only 1 or 2 days a week.
Attracting collectors through advertising as
you would do with most jobs – is an
incredibly difficult task. That is because it
takes a special and very particular style of
person to take on such a role.
Our current employees in field appeals are
some of the most dedicated people I have
ever had the pleasure of working with. Just
the other day I was sitting back enjoying
listening to a story about how one of them
had played a ghost on Runaway Island, got
dunked in a river while performing their own
stunts and sacked for not being part of the
union.
When Michelle Daffy (Field Appeals
Coordinator) recently injured herself one of
our staff travelled via two trains and over a
few hours to visit her and make sure that
she was all right. Now, that’s the type of
special person who works in our field
appeals team and without the funds raised
by them, SCI Australia would struggle in
providing many of our services. There must
be more than 35 people in Sydney who have
these attributes and would like to work for
us. We just have to get the message out there.
Word of mouth is still the best method for
this and we can all help to spread the word.
If you know someone or you are a person
who likes to get out and about, have a bit
fun, work for a worthy cause and earn some
money on the side, spread the word and give
Michelle a call at our Surry Hills office 02
9281 8214.
AQA wants you!
n
As we are all aware, the quest for the dollar
is very competitive. We see collectors from
the Salvation Army, AIDS Foundation,
Greenpeace and many more every single day.
However, there are over 4.1 million people
in Sydney and we are currently trying to
canvass them with only 35 collectors. So
even though the competition for each dollar
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 9
FUNDRAISING
Collaroy: a Community Effort
Monica Fernandez, Marketing and Communications Coordinator
Haminex, Inglewood Wines, Jupiters
Gaming, Kemvale, Konami Australia,
Manly Daily, NSW Rugby Union, Orlando
Wyndham, Pittwater R.S.L. Club, Plateau
Food Distributors, C.S.B.C. Golf Club,
Raine and Horne Collaroy, Ray Pallister,
Sanyo Office Machines, SKY Channel, Star
Games Corporation, Tyrrells Vineyards,
and Zultys Technologies.
Thank you to everyone who participated at
the golf day. We look forward to seeing you
all again on the green next year!
ASX-Reuters Raise the Roof
for SCI Australia
Collaroy Services Beach Club’s Director David Ford hands SCI Australia’s CEO
Greg Bergan the proceeds of the Club’s golf day.
I
t is always an honour to accept the
generosity and the support of the
community. And the Collaroy community’s
support towards the Collaroy Rehabilitation
Centre has been very encouraging. Support
has been given not only in morale but also
through tireless efforts of fundraising and
promoting community awareness.
On 5 May, the Director of the Collaroy
Services Beach Club, David Ford,
presented a cheque for $14,273 to SCI
Australia Chief Executive Officer, Greg
Bergan. This amount was raised from a
successful golf day organised and operated
entirely by the Club last March for the
planned SCI Australia Collaroy
Rehabilitation Centre.
On accepting the cheque Greg Bergan said,
“We thank the Collaroy Services Beach
Club for their unwavering support and
efforts to help us reach our vision; a holistic
rehabilitation centre which will welcome
those with newly acquired spinal cord
injury and help them go from strength to
strength.”
10
ACCORD WINTER 2004
And of course we cannot forget the
sponsors of the Collaroy Golf Day, whose
involvement made the day so successful
and enjoyable. They are: Ainsworth Game
Technology, Albert Crocker & Sons,
Aristocrat Technologies Australia , Avon
Products, Ballande Group Australasia,
Betta Wardrobes and Shower Screens, C.A.
Australia, Carlton and United Breweries,
Coca Cola Amatil, Doyle Spillane,
The Australian Stock Exchange–Reuters
Foundation has taken on the SCI Australia
cause and is listing us as one of their
beneficiaries for its 2005 annual charity
golf tournament and gala dinner. This
annual event has distributed nearly $14
million dollars to charities in the last 17
years.
To support this worthy effort, we will be
selling Art Union tickets from 1 September
this year with the draw on the night of the
gala dinner. The list of Art Union prizes
will be published in a later edition of
Accord. In the meantime, if you would like
to support SCI Australia by selling some
tickets on our behalf, please call Monica
Fernandez on 02 9313 9426.
n
Kurandah Homestay
Same as Autumn 2004 edition
HEALTH
What’s the Good Oil on Fat!
Grant Nickel
F
oods often go through trends and tend to be either in or out of
favour. Fat has the reputation of being the ‘bad boy on the
block’. In its defence, fat would have to be the most misunderstood
nutrient going. Understanding the role of fat in our diet can help
us fine tune our health. Particularly those of us with a physical
disability, who need to understand the additional demands we put
on our bodies as well as getting the balance right so that fat
consumption doesn’t lead to gaining weight.
Is a Fat Free Diet Healthy?
Dietary fat is essential for life and carries essential vitamins. Fat
also makes up the building blocks for many of the body’s hormones. Without these essential vitamins and hormones we would
become very ill and abruptly die. If we were to become deficient
in these vitamins and hormones by means of a very strict low fat
diet what would result is poor health. For a person with quadriplegia
being deficient in fat soluble vitamins may make a simple common
cold evolve into something more serious like pneumonia. Not
forgetting the old enemy for anybody that sits on their buttocks
for up to 16 hours a day, the risk of reduced skin integrity leading
to pressure areas. Being deficient and having low resistance, the
open sores have a greater chance of becoming infected and septicaemia setting in. A fat deficient diet won’t kill you outright,
however, the poor health which results may.
150 g of salmon contains approximately 7 ml of oil high in
polyunsaturated fatty acids. The polyunsaturated oil in fish has
the added benefits of being rich in omega-3, which are of great
benefit
Understanding the Nature of Fat
Understanding the difference between oil and fat is similar to noting
the difference between water and ice. Water and ice are both made
from the same compound, H2O. Water is the liquid state of H2O
and ice is the solid state of H2O. Similarly, oil and fat are made
from the same compounds, fatty acids (collectively known as fatty
compounds). Oil is the liquid state of fatty acids and fat is the
solid state of fatty acids. However, whereas ice has a universal
melting point of anything above 0OC, fatty compounds act very
differently. Each fatty compound has its own melting point and it
is the ratio of the saturated, polyunsaturated and unsaturated fatty
acids in a fatty compound that determines whether it’s a liquid or
a solid at a given temperature.
For instance, a saturated fat called dripping (the fat collected after
cooking sausages and steaks) is a solid at room temperature (24OC).
Dripping even has the potential to be a solid at body temperature
(36.6OC) and this is directly owing to the very high number of
saturated fatty acids in its compound. Butter is also known as a
saturated fat but only just makes a solid at room temperature. The
reason butter melts more easily is because there are fewer saturated
fatty acids in its compound compared with dripping. Olive oil on
the other hand, which is still a liquid at 0OC, has a high number of
monounsaturated fatty acids, a significant amount of polyunsat(continued next page)
150 g of battered fish contains around 23 g (4.5 tsp) of fat. In
addition to the batter absorbing a large amount of fat, the type
of oil commonly used by take-away shops is a saturated fat.
The cut of beef on the left is a lean 100 g sirloin; the fat content
is approximately 9 g (2 tsp). The cut on the right is of similar
size but does not have the visible fat removed. The inclusion of
this visible fat increases the overall fat content to 15 g (3 tsp)
conservatively, up to 26 g depending on the cut. The visible fat
is heavily saturated and needs to be trimmed before cooking.
The use of a non-stick pan and a light splash of either
polyunsaturated or monounsaturated oil will replace the need
for the visible fat.
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 11
(continued from previous page)
urated fatty acids and very few saturated
fatty acids in its compound.
Knowing What Causes Harm
How does knowing the difference between
the usually solid saturated fat and the free
moving liquids such as polyunsaturated and
monounsaturated oils relate to good health?
Imagine your blood. Its role is to flow and
carry nutrients, hormones, oxygen, etc. It
flows away from your heart through your
arteries and flows back to your heart through
your veins. It would not be good for the flow
of blood if arteries became narrow or for
that matter blocked. So, just as the highly
saturated dripping fat remains a solid at
body temperature, so can a formation of
saturated fatty acids (known as low density
lipoproteins or bad cholesterol) become a
solid, collecting on the inside of the
cardiovascular system as plaque. The higher
a person’s diet is in saturated fat, the higher
the risk of cardiovascular diseases such as
atherosclerosis and heart attack.
How Much Dietary Fat do we
Need to Eat?
It is proposed that an average male and
female need to consume about 70g and 50g
of fat per day, respectively. Due to paralysis,
energy requirements of people with a spinal
cord injury are significantly lower and
logically this reduces the need for energy.
For males and females on a low fat diet,
figures of 50g and 30g of fat/day respectively are commonly used. I would strongly
encourage people not to go under these
amounts as they will be running the risk of
becoming nutrient deficient.
It would be more sensible to eat the recommended amount of fat (70g for males and
50g for females) reassess your health and
whether you are gaining, maintaining or
losing weight. If you gain weight, look at
increasing your activity (if possible) before
reducing the fat in your diet. If you have
no option but to go on a low fat diet
remember that rapid weight loss is
unhealthy (more than 2kg/wk) and is
particularly bad for skin integrity. If you
maintain your weight you have struck the
ideal balance. And if you lose weight, look
at increasing your fat intake and eating
foods with the good oils.
Putting it All into Context
In establishing that dietary fat is necessary
for our well being and poly- and monounsaturated oil is great for our health, it is
important to look at the whole picture! Try
to work out your ideal balance of fat intake
and reassess how you are fitting into your
favourite pair of jeans every month or so.
Take into account whether you have been
active or not and alter what you eat
accordingly. And at times be mindful that
fat intake is just one of the many components to a healthy balanced diet.
n
Where are the
Healthy Fats?
Polyunsaturated
Sunflower oil
Safflower oil
Soybean oil
Linseed oil
Fish
Peanuts
Monounsaturated
Canola
Olive oil
Macadamia
Avocado
Walnuts
Where are the
Unhealthy Fats?
Saturated
Butter
Cream/sour cream
Chicken skin
Meat/animal fat
Sausages
Take away/fried foods
Cakes and biscuits
Coconut oil
Palm oil
Goods and Services
The Independent Living Centre NSW has moved to 1 Fennell
Street North Parramatta NSW 2151. The new telephone number
for product inquiries is 1300 885 886, fax 02 9890 0966. All
other calls should be directed to 02 9890 0940.
The Australian Civil Aviation Safety Authority (CASA) has
information regarding air travel for passengers with a mobility
disability or vision impairment. Tips on travel include the use
of aisle chairs, on board bathroom facilities, mobility aids,
stowing of wheelchairs, assistance by cabin crew etc.
www.casa.gov.au/airsafe/disable/
The City of Canada Bay Council has a new brochure
‘Services for People with Disabilities in the City of Canada
Bay’ available from Citizens Services tel: 02 9911 6555
www.canadabay.nsw.gov.au.
Warringah Council’s Disability Information Service can
provide the booklets ‘Accessible Community Facilities in
Warringah’ and ‘Leisure for Youth and Adults with Disabilities
12
ACCORD WINTER 2004
in the Northern Beaches’. For more information tel:
02 9942 2686, www.warringah.nsw.gov.au/disab.htm.
The Spastic Centre has launched CP Helpline a telephone
information and support service operating in NSW 9 am to 5
pm Monday to Friday (except public holidays). CP Helpline
can be contacted by phone 1300 302 920, TTY 1300 302 925,
through the National Relay Service 13 3677 or the Translating
and Interpreting Service 13 1450, by email cphelpline@
tscnsw.org.au or by mail CP Helpline, PO Box 184, Brookvale
NSW 2100.
The FreeWheeler Beach Chair which is designed for rough
terrain, sand and snow can be hired (charges apply) from the
Northcott Society tel: 02 9890 0100, 1800 506 071 email ets@
northcott.com.au, www.northcott.com.au. It is also available
for loan free of charge from Wollongong Council 02 4228 0023,
Manly Council 02 9976 1562 or the Lifeguard 02 9977 3434,
Mosman Council 02 9978 4120 and Tweed Shire Council
02 6674 1311.
PARALYMPICS
Aussie, Aussie, Aussie!
Penni Lewer, Australian Paralympic Committee
W
heelchair rugby in Australia is a
different sport now than it was five
years ago when our team was considered
‘a bunch of rogues’. Since then, attitudes
have changed, largely due to one determined American.
Terry Vinyard is based in Brisbane. He
moved to Australia in 2001 after coaching
the Australian team to a silver medal at the
2000 Paralympic Games. Back then he was
still part-time, flying over every couple of
months since the beginning of 1999 to turn
The wheelchair rugby at the Paralympic
Games in Sydney was one of the most
popular sports, with spectators turned away
for almost every game. The final against
the USA attracted a loud, boisterous crowd.
As Porter recalls, “We were blown away
by the level of support. The final was one
of the showcase games of the Sydney
Paralympics.”
And The Steelers didn’t disappoint. After
a gripping fight, the Australians lost… by
one point. Everyone but the players and
a fledgling side into a competitive team that
could take on the world’s best in Sydney.
“It was tough,” says Vinyard of those early,
hurried trips down-under. “I couldn’t really
track the athletes properly and it was
August 2000 before we found our best lineups that looked like they would click when
it mattered.”
their coach were a little surprised by the
home team’s performance.
Long-time player, Steve Porter, says that
Vinyard immediately brought a lot more
structure to their training and games. “We
always had the talent in the country. We
were ranked fifth in the world at the time
but, to be honest, we probably never would
have gone any further. Terry had 12 years
of experience and knowledge of the sport
at the highest level. Even now there may
only be two other coaches in the world of
his standard. We are lucky to have him.”
Following Vinyard’s success at the 2000
Paralympic Games, he made the decision
to move from Florida to Australia on the
strength of a promise by his current
employer, the Australian Paralympic
Committee (APC). “It was a tough decision
to leave everything that I had built in
Tampa. We had a quality program with a
strong tradition but I saw it (moving to
Australia) as a great opportunity and
challenge. The fact that the APC wanted to
“I really felt like we could get to the medals
matches and compete as long as we
believed in our game plan and didn’t put
the higher ranked teams on a pedestal,” said
Vinyard.
win and was committed to excellence was
a determining factor.”
He wanted to give Australian players more
opportunities to play, starting with a
national league. With administrative
support from Wheelchair Sports Australia,
Vinyard kicked off the Australian Wheelchair Rugby League in 2002 and players
all over the country benefited instantly.
“Members of the national squad played an
extra 15 matches that year. The league now
plays a vital role in the sport’s development
and in the preparation of the Australian
team,” explained Vinyard.
National training camps are usually run in
conjunction with league events, helping
Vinyard to make the most of his limited
budget.
After their results at the 2000 Paralympic
Games, Australia was clearly one of the
teams to beat at an international level and
that’s exactly what happened at the World
Championships in Sweden two years later.
The team was confident of a medal, if not
the title. But, after an unexpected and disappointing loss to the US in the semi-final,
the Australians finished third and also
slipped to third on the world rankings.
(continued next page)
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 13
(continued from previous page)
“It may prove to be a turning point for the
team,” said a guarded Vinyard. “The guys
came away feeling they could have done
more. They were very disappointed. I think
there’s been a shift in team culture since
then. We’ve also made some changes to the
program. The guys keep training diaries and
our testing is more comprehensive and
accurate.”
But it wasn’t enough for Vinyard. The team
lacked international competition, particularly in comparison to their competitors in
the US, Canada and Europe.
“International tours are expensive and our
budget was cut by at least ten percent about
a year ago. Our competitors in the northern
hemisphere have ready access to so much
more competition that I feared we would
be left behind,” said Vinyard.
The team toured the US for two weeks in
January but that was the only international
trip the trimmed budget would allow in the
lead-up to the Paralympic Games. Vinyard
had to find another solution. He looked to
sixth-ranked New Zealand, against whom
they played a number of matches in the
lead-up to the 2000 Paralympic Games,
almost “to the point of boredom” according
to Steve Porter.
“It was one of Terry’s strategies and it
worked. New Zealand over-ranked us when
Terry started but we learned how to beat
them consistently and that made a big
difference in Sydney,” said Porter.
Says Vinyard, “Even now New Zealand’s
international ranking is misleading. Like us
they don’t have a huge budget and they
simply haven’t played the ranking
tournaments. We play New Zealand as
much as we can because, if we can beat
them on their good days, we can beat
anyone.”
It’s a formula and partnership that seems
to be working. Together Australia and New
Zealand funded and organised the first
international wheelchair rugby tournament
in Australia (outside the 2000 Paralympic
Games). The Super Series was held in
Sydney at the beginning of May and drew
teams from Japan and Great Britain. It was
a triumph for Vinyard who decided that “if
we can’t go to the international competitions, we’ll bring the international
competitions to us.” At the end of the
league-type tournament there was a threeway tie for first between Australia, New
Zealand and Great Britain. After a points
count-back, Australia was declared the
14
ACCORD WINTER 2004
winner. But, according to Vinyard, the tooclose results were an eye-opener for a lot
of teams around the world.
“The team from Great Britain was the
biggest surprise. They have a huge budget
and it’s really paying off. But the New
Zealanders are a big worry when they are
in form.”
Wheelchair Rugby is an intense,
physical team sport for quadriplegic
(tetraplegic) male and female athletes. It originated in 1977 in Canada
and is rapidly developing around the
world.
Wheelchair rugby combines elements of basketball, football and ice
hockey and is played on a basketball
court.
There are four players in each team
and up to eight substitutes. Players
are classified according to their
ability and are assigned a point value
from 0.5 to 3.5 points. The four
players on the court cannot exceed
8.0 points.
A volleyball is used and it can be
carried, dribbled or passed but
cannot be kicked. The ball must be
bounced at least once every 10
seconds. Athletes score goals by
carrying the ball over the opponent’s
goal line.
Wheelchair Rugby is played in four
eight minute (stop-time) quarters.
Vinyard predicts the wheelchair rugby
tournament at the 2004 Paralympic Games
in Athens will be the closest and toughest
yet.
“There are five teams who could win. It
will come down to a call or a bounce or an
error,” he said.
But Vinyard is excited and looking forward
to the Games and the challenges that follow
afterward. He’s already decided he wants
to stay. “I know the rugby world considers
me Australian,” he laughs. “I want to be
around for the future of this Australian
team. Ours was already the youngest side
at the 2000 Paralympic Games and we’re
getting younger. We have a couple of
exciting youngsters who have replaced
some retiring veterans.
“I would like to celebrate my 20th year in
the sport with a gold medal in Beijing. I
think that’s a very feasible goal with this
team.”
He is quick to point out though that they
can still be a winning team now, and
especially in September in Athens. Next on
the calendar is the Chris Handy Cup against
regular foes New Zealand. They will play
the five-match series in Cairns in an effort
to simulate the hot Athens conditions.
Always looking for that ‘edge’ Vinyard has
made an inspection trip north to see how
far he can push the exercise.
“We chose Cairns firstly for the climate but
also because most of the guys have never
been there. It’s an unfamiliar place, an
unfamiliar venue and an unfamiliar court.
I’ve even booked athletes village-like
accommodation. I want the players to
practice adapting to new conditions and a
new environment,” he said.
He is hoping for a close tournament, with
New Zealand in good form at the recent
Super Series. New Zealand’s rise is a byproduct of his work in Australia that he
didn’t consider when he first took on the
coaching role back in 1998. Another zone
member, Japan, has also improved as a
result of better and increased competition.
“Back in 1996 in Atlanta, there were no
fulltime wheelchair rugby coaches
anywhere in the world. By 2002 there were
three and now you would struggle to find a
part-time coach. That shift inevitably raises
the bar and teams have no choice but to
step up,” explained Vinyard.
He admits he has to work hard these days
to stay ahead of the competition but, to
some extent, he only has himself to blame.
Many of his ex-players in the US are now
coaches and two of them are coaching topranked international teams – Canada and
Great Britain. “It’s almost like playing
against myself when we come up against
them. I often know what they are doing and
why and I laugh when they use my signals,”
he says with a smile.
But it’s testimony to Vinyard’s long-time
involvement with the game and a passion
that just keeps building. He is excited about
the continued development of the sport in
this country and happy to be a part of it.
“I’m helping to create players and coaches
now. We have some intelligent players who
will some day lead Australia in competition.
I expect to hear my own calls coming out
of other people’s mouths for some time to
come.”
n
ACCESS
Access to Entertainment Venues – Options,
Opinions, Codes and Standards
Greg Killeen, Information Officer
O
rganisations and individuals continue
to advocate to ensure people with
disabilities, their families, friends and
carers can obtain equal access to the built
environment, services and facilities which
should be available to all.
employee or performing artist. Access to,
from, in and around venues will differ
greatly due to other factors including:
People with disabilities who are interested
in attending the performing arts often
encounter access difficulties. Australia has
many types of venues for the performing
arts ranging from small theatres to large
sporting arenas and parklands.
•
Barriers to Equal Access
Access to these venues for people with
disabilities may differ depending on
whether the individual is a patron,
•
•
•
•
the venue being built prior to the
application of relevant access codes
and standards;
the venue being built with poor design
features and without appropriate
facilities for people with sensory
disabilities;
the venue not having accessible toilet
facilities;
access to the venue for people with
physical disabilities being via the
main entrance but through a back door
via a laneway and kitchen etc.;
the viewing and seating areas for
people with disabilities being poorly
•
located and/or having only one
location (often in the most expensive
category of seating or at the rear of the
venue); and
the venue closing its accessible
doorways and entries before, during
and/or after the performance
preventing access into or egress from
the venue.
These are just a few examples as there are
far too many issues and scenarios to list
here.
Building Codes and Standards
A number of standards, codes and legal
requirements try to ensure equal access to,
(continued next page)
MASTER LOCKSMITH
ACCESS KEY
MLAK
Providing after hours access for people with disabilities
to accessible toilets and other facilities.
For the location of your nearest locksmith who
can supply the universal lock and key call the
Master Locksmith’s Association on 1800 810 698
For more information and the locations of facilities
fitted with MLAK call
(02) 9661 8855; 1800 819 775
or download from the
Spinal Cord Injuries Australia website:
www.spinalcordinjuries.com.au/faqs
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 15
through a rear lane etc. While the offer of
assistance to people with disabilities is
generally appreciated, a number of issues
should be considered where a person with a
disability is carried on a staircase. The
increase in litigation and recent increases
in the cost of insurance premiums have
implications for all involved, including the
carrier, the carried, and the owner and/or
management of the venue. Apart from the
potential danger to the person with a
disability if he or she were to be dropped,
there are issues of insurance, OH&S and
WorkCover for the staff and/or patrons of
the venue who are assisting and at risk of
injury themselves.
(continued from previous page)
and egress from, venues, facilities, services
and the built environment for people with
disabilities including:
•
•
•
•
•
•
Australian Standards such as access
standard AS 1428, lift standard AS
1735 and parking standard AS 2890;
the Australian Building Code and
guidelines;
state and local government planning
policies;
the federal Disability Discrimination
Act;
various state anti-discrimination
legislation;
the HREOC Advisory Notes on Access
to Premises.
These requirements provide the basis to
design accessible facilities for new and
existing venues. When new venues are
being designed there is the opportunity to
ensure that appropriate design features are
included and to apply best practice in access
for all. However with the redevelopment
and/or upgrading of an existing venue,
access may be compromised.
For example, depending on the size, type
and layout of an existing venue, vertical
access can be provided by a variety of
equipment:
•
•
•
•
lift (between floors);
porch lift (for maximum heights of 1
metre);
stairway platform lift (for short
distances or between floors); and
portable stair climber (batterypowered, operated and guided by
SCI Access
Checklist 2004
The Access Checklist is used for
auditing streetscapes, buildings, parks
etc. It has been updated with the latest
requirements for Braille tactile
signage and AS1428.4 tactile
indicators.
You can purchase a hard and electronic copy for $200. This also comes
with an agreement to reproduce
copies for internal use.
Contact SCI Access Australia on
tel: 02 9313 9413,
fax: 02 9669 1761 or email:
c.cheung@spinalcordinjuries.com.au
16
ACCORD WINTER 2004
venue staff, attaches to the wheelchair
with seated occupant, only suitable for
manual wheelchairs).
Although all have been designed to provide
access many people with physical
disabilities dislike using some types of
equipment. The majority I have spoken with
generally do not like using portable stair
climbers or stairway platform lifts. They cite
safety, dignity and operational requirements
(e.g. where a key is required to operate the
equipment) as reasons for their preferences.
Safety should not be an issue because this
type of equipment must meet various
standards and lift codes. And after
installation it must pass the inspection of
workplace safety and building authorities
(such as WorkCover and the local council).
Locating a key or staff member to use locked
lifts is time-consuming and inconvenient.
Perhaps employing the ‘one key fits all’
Master Locksmith Access Key (MLAK)
should be considered.
As a person who uses an electric wheelchair,
I prefer to use the same entry and exits as
all other patrons. However, if alternative
access is the only option I am willing to use
any or all of the above-mentioned access
equipment except a portable stair-climber.
I am reluctant to be carried but will
grudgingly submit for up to two stairs,
definitely not for a whole staircase. I have a
portable ramp that I take if I am aware there
are one or two steps.
Occupational Health and Safety
(OH&S) and Litigation
Although some with physical disabilities do
not like using the various types of access
equipment, there are many who do not care
how they get into a venue as long as they
see the performance. Many people are
willing to be carried up or down a staircase
of a venue (either in or separated from their
wheelchairs) to enter via a kitchen or
Obstacles to Creating Access
The requirements to provide equal access
to an existing venue may be impeded due
to:
•
•
•
the size and structure of the building;
the access equipment and any
structural alterations which may be
necessary; and
the cost for the developer/building
owner (the DDA offers an exemption
where providing access would be
considered an “unjustifiable
hardship”).
Also, when upgrading an existing venue,
general access may be impeded if the only
option is to install a stairway platform lift.
Conclusion
This article focuses on access to
entertainment venues for people with
disabilities and highlights the options for
and operational difficulties associated with
various types of access equipment.
However, this equipment is only one
element of the access/egress needs of people
with disabilities, their families, friends and
carers.
Other important access issues include the
provision of vehicle parking and drop-off
zones, appropriate seating/viewing areas to
accommodate a person’s wheelchair or
mobility aid that include unobstructed sightlines, accessible toilet facilities, appropriate
lighting, signage and hearing loops etc.
As a society we need to ensure all people
have equal access to services, facilities and
the built environment. Although statistics
show that approximately 20% of people in
Australia have some form of disability now,
we also need to plan for the needs of our
ageing population.
n
ADVENTURE
Canadian Access Challenge
Reprinted by permission British Columbia Mobility Opportunities Society
H
e never thought he’d say it, but Mike
Nemesvary couldn’t wait to get back
into his wheelchair. After spending two
nights and three days in the protective
confines of a specially designed sleeping
bag, while being pushed, pulled and lifted
through the wilderness to the base of Black
Tusk Peak in British Columbia, Canada’s
Garibaldi Provincial Park (near Whistler),
Nemesvary considered his wheelchair to
be a luxury.
Nemesvary’s excursion marked the British
Columbia Mobility Opportunities
Society’s (BCMOS) fourth annual Access
Challenge —a three-day backcountry
wilderness expedition that combined
adventure, competition and education with
camping, hiking and mountaineering. From
20–22 August, six hikers with disabilities,
each fuelled by four nondisabled participants, trekked their way across 36
kilometres of mountainous terrain. Using
the uniquely designed TrailRider access
vehicle, ‘sherpas’ guided their teammates
with disabilities through alpine meadows,
over jagged rocks and across raging waters.
Each team had been educated on the
practices of ‘no trace’ camping. The event
demonstrated what can be accomplished
through a combination of strong will,
enduring spirit and undeniable trust.
Nemesvary, 45, is president and CEO of
‘Round the World Challenge. “It’s just a
blast for me to get back into the
mountains,” he said from his office in
Ottawa. “I love that environment. But you
get used to the comforts of home. The
mummy bag did its job of keeping me
warm and keeping the bugs away, but I was
glad to get out of it.”
A former World Cup champion freestyle
skier and Canadian junior trampoline
champion, Nemesvary injured his spinal
cord in 1985 when a routine trampoline
workout went wrong. Practicing a ‘full infull out’—a laid out double twisting,
double back flip—he lost his orientation
and landed on his neck, leaving the then
24-year-old quadriplegic at the C4-5 level.
While participants of the outdoor expedition
admitted that day one was indeed a ‘slog’,
from cameras and chaos in the parking lot
to a 3,500-foot climb across six kilometres
of treed terrain, their tireless efforts proved
to be a worthy price to pay for reaching the
alpine section. When they reached an elevation of 5,100 feet, the six teams had the
pleasure of seeing clouds disperse and the
sun highlight their temporary quarters in
Taylor Meadows. There, after everyone’s
adrenaline settled, participants were able to
enjoy a time of outdoor relaxation and,
surprisingly, some epicurean cuisine.
“Our team made a Thai noodle dish one
night, and Mexican meatless burritos the
other night,” said Kurt Turchan, one of the
able-bodied volunteers on Nemesvary’s
Quad Hoppers team. “But one of the teams
had steak and red wine on the second night.
That was quite impressive. I don’t know
how they managed to keep the steaks cold.”
Incidentally, Turchan and Nemesvary had
a chance to reconnect with their youth—
the two had played lacrosse together as
young boys in Ottawa and had not seen each
other in almost 20 years.
On the morning of day two, the teams
awoke to a misty fog blanketing the
meadow, prelude to the most magical of
days. Enthusiastic participants navigated
their way across a 10-kilometre stretch of
trail, through fields painted colourfully by
wildflowers and sparkling white snow,
eventually descending into the cinder flats
underneath Panorama Ridge in the shadows
of Black Tusk. Helm Creek campsite served
as the teams’ evening accommodations.
While the first day of the Challenge
represented a huge accomplishment,
‘unbelievable’ is how Turchan described the
second day. “It felt like we were in the far
north. Definitely my favourite day.”
Nemesvary echoed that sentiment, commenting, “Day two was the most pleasurable, being up at the snowline.”
Turchan also described hiking with the
TrailRider as a combination of hiking and
mountain biking. “You have to pick clean
lines for the TrailRider, which is a mountain
biking skill, and yet you are on foot and
enjoying the trails as a hiker.”
The TrailRider can be thought of as the
offspring of a rickshaw and a wheelbarrow—a specially designed, multi-terrain
access single-wheeled chair with handles
in the front and back that can be simultaneously pushed and pulled by nondisabled
hikers. During Access Challenge, participants with disabilities were seated in
mummy bags—sleeping bags specially
designed for TrailRider users who are not
able to maintain core body temperatures as
easily as their nondisabled teammates. The
bags are designed to protect TrailRider
users from wind, rain, and cold
temperatures and are equipped with handles
to make transfers to and from TrailRiders
easier for able-bodied volunteers.
The birth of the TrailRider can be credited
to Sam Sullivan, a quadriplegic Vancouver
City councillor. An avid outdoor adventurer
before a 1979 skiing accident robbed him
of the full use of his arms and legs, Sullivan
founded BCMOS in 1985—a not-for-profit
organization that helps people with
disabilities enjoy the great outdoors. He
teamed up with long-time friend, engineer
and Tetra Society of North America
volunteer Paul Cermak to design and build
the first TrailRider. Tetra is a sister
organization of BCMOS that recruits
technically skilled volunteers to create
(continued next page)
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 17
(continued from previous page)
customized assistive devices for people
with disabilities.
In the summer of 1999, Sullivan, Derek
Pritchard, an Outward Bound director, and
the Skagit Valley Environmental
Endowment Commission created the first
Access Challenge, held in the Skagit Valley
east of Vancouver. Technical assistance in
laying out the route for Access Challenge
2002 was provided by Scott Flavelle, a
consummate climber and master
mountaineer, well known in the Whistler
area. Flavelle is also recognized for his
work as technical director for Discovery
Channel’s Eco-Challenge series. Key
supporters of Access Challenge 2002
included Whistler Blackcomb Foundation,
British Columbia Paraplegic Association
and the Rick Hansen Institute. While this
was Nemesvary’s first time participating in
the event, Sullivan has taken part in all four
Access Challenge expeditions, most
recently as a member of Team Advil.
Nemesvary and Sullivan met in early
September, 2001, when Nemesvary was
nearing completion of his ‘Round the World
Challenge—a seven-month journey across
20 countries, making him the first
quadriplegic ever to drive around the world,
raising $10 million for spinal cord research.
He drove every kilometre himself, in a
specially equipped 1991 Chevrolet Blazer.
When the homestretch of his journey
brought him to Vancouver, Sullivan invited
Nemesvary to join him on an hour-long hike
with TrailRiders in the hills above Spanish
Banks, located near the University of
British Columbia.
During the hike, Sullivan’s talk of Access
Challenge intrigued the ambitious world
traveller. The two men kept in touch, and
Nemesvary eventually signed up for Access
Challenge 2002. And although the
expedition was not marketed as a race, it
became apparent that some friendly team
rivalry surfaced throughout the three days.
“I know Sam well enough to know that
while the event isn’t promoted as a race,
he definitely has a competitive streak in
him,” said Nemesvary.
As it happened, most of the rivalry was
between Sullivan’s Team Advil and team
Raging Estrogen, the only all-female team,
headed by Michelle Amerie of Toronto. On
the morning of day three, Raging Estrogen
was the first team out of camp, and as they
disappeared along the trail into the
wilderness, they looked back and chanted,
“nah nah nah nah, nah nah nah nah, hey
hey hey, goodbye.” The friendly teasing
18
ACCORD WINTER 2004
quickly got Team Advil scrambling, a team
comprised of three Eco-Challenge
participants. In hindsight, Raging Estrogen
realized that chanting might not have been
their most strategic move. However, the
women, complete with sprains, bruises and
blistered feet, remained ahead of the überathletes for a respectable portion of the
homestretch. Ultimately, Team Advil took
the lead, but the women continued to catch
up with them whenever Team Advil stopped
to enjoy the scenic views. As it turned out,
Sullivan’s team mates were actually
stopping to catch their breath and to listen
for the voices of the ‘raging’ women behind
them, indicating that it was time to move
on.
going!” It was appropriate, then, that team
Quad Hopper’s mantra during the three-day
Challenge was a twist on the ‘80s rock
classic, We Will Rock You, by Queen.
Nemesvary altered the chorus of the song
and got his team to chant, “we won’t, we
won’t drop you.”
While Nemesvary’s team mates sought to
push themselves, they didn’t let the
pressure of finishing in a specified time or
before the other teams prevent them from
enjoying their surroundings. Nemesvary
wanted to take it all in. As he put it, “It
takes going all the way around the world
to appreciate what is in your own
backyard.”
The teams’ efforts eventually brought them
to the Cheakamus River, and to what many
participants considered to be the climax of
the outdoor expedition. The participants,
including their TrailRiders, crossed the
Cheakamus Canyon suspended via a zipline engineered by the North Shore Search
and Rescue team, marking the first time
such a feat had been completed by high
quadriplegics and people with significant
physical disabilities. Search and Rescue
volunteers were present to assist the
participants, and kayakers were stationed
below in the river.
The 20-kilometre trek on day three took the
teams over challenging switchbacks and
down steep rocks, proving to be the hardest
portion of the outdoor expedition.
Nemesvary admitted that he expected the
third day to be similar to the first, when
they ascended the switchbacks. Instead he
found that the narrow trails covered by
jutting rocks and slippery tree roots made
it difficult to accommodate everyone plus
the TrailRider.
“I was scared,” he said. “And I’ve taken
lots of risks. It definitely got my adrenaline
The arduous terrain on the third day put
big-time strain on the Quad Hoppers.
Communication became more challenging
because there were more risks involved.
The team had to regroup, think differently,
and fine tune their strategy on how to
descend the steep rocks. Communication
between the team members guiding and
operating the TrailRider was crucial.
The zip-line was the idea of Susanne
Olovson, program coordinator for
BCMOS. She wanted to add a water
component—absent from previous
events—to Access Challenge 2002. “A
person with a disability had expressed to
me an interest in water,” Olovson
explained. “I wanted to make the event
challenging for everyone. By incorporating
afraid of a new challenge.” For him, one of
the biggest highlights of participating in
Access Challenge was the incredible
accomplishment he felt from facing his
fears head-on and tackling something so
demanding. Living with a disability is
difficult in itself, but taking on additional
physical challenges takes stamina, endurance and a huge amount of inner strength.
According to participants, this is what
excites, educates, enriches and makes life
interesting. The unknown piques interest,
and the thrill of a challenge sustains
participants to the end.
the zip-line, even the rescue workers were
challenged.”
For Nemesvary, he felt very much at home
floating through the air and tilting back. “I
loved it! It capped off the event nicely. I
had a big smile on my face coming across
the zip-line.”
The event culminated once the teams
crossed the river to the finish line. After
being greeted by many friends and family,
participants were treated to a catered
barbeque, an awards ceremony and a
massage tent staffed by volunteers from the
University of British Columbia massage
therapy clinic. As if they weren’t exhausted
enough, a number of diehards continued the
celebration late into the evening in Whistler.
“The event was first class from beginning
to end, from the route that was chosen, to
the equipment that was used, to the
refreshments, food and awards at the end,”
commented Nemesvary. “There is nothing
else designed anywhere in the world that
gets you into such inhospitable surroundings. I mean, why should that part of nature
only be reserved for able-bodied people?”
Other Access Challenge 2002 participants
with disabilities were Alexis Chicoine of
North Vancouver, Brad Jacobsen of
Vancouver, and Linda McGowan of New
Westminster. Nondisabled participants
originated from the Vancouver area,
northern British Columbia, eastern Canada
and Washington, D.C. Nemesvary’s
personal care assistant, who accompanied
him on the hike, was from Bali.
For those contemplating taking part in the
annual outdoor expedition, Nemesvary
says, “Go for it. Don’t be intimidated or
Nemesvary still stays in touch with his team
mates, mostly via email, and while he is
considering participating again next year,
he would make more of an effort to train
for the event. Turchan has vowed to lose
fifteen pounds, Nemesvary will try to lose
seven pounds, and together they will vie
for time and team spirit as they refine their
game plan.
For those interested in participating in
Access Challenge, please contact British
Columbia Mobility Opportunities Society,
Box 27, 770 Pacific Boulevard South, Plaza
of Nations, Vancouver, British Columbia
V6B 5E7 Canada. Tel: +1 604-688-6464
www.reachdisability.org/bcmos, email:
bcmos@disabilityfoundation.org
n
New Publications
Disability: the Use of Aids and the Role
of the Environment (Disability Series
AIHW cat. no. DIS 32) was recently
published by the Australian Institute of
Health and Welfare. The report is based on
1998 statistics and other related research.
The report can be downloaded at
www.aihw.gov.au/publications/dis/duare/
duare.pdf or purchased for $23 from The
Publications Officer, Media and Publishing
Unit, AIHW, 26 Thynne St, Fern Hill Park,
Bruce ACT 2617.
Access Sydney
Books
available now
$10.00 plus p&h
Tel: 02 9661 8855
From There to Here: Stories of
Adjustment to Spinal Cord Injury
published by No Limits Communications
relates how 45 people with SCI have adapted
to their paralysis. The book is available from
the publisher and from Amazon.com for
$US18.95 plus $US15 postage and handling.
For more information on the book go to
www.newmobility.com/bookstore.cfm or
email kim@leonardmedia. Send mail orders
to No Limits Communications Inc., PO Box
220, Horsham PA 19044, USA.
Paralysis Resource Guide by Sam Maddox
and recently published by the Christopher
Reeve Paralysis Foundation is available free
of charge to any individual or organisation
(single copies only) anywhere in the world
by contacting the Paralysis Resource Center,
636 Morris Turnpike, Suite 3A, Short Hills
NJ 07078, USA email info@paralysis.
org, or order online at www.paralysis.org.
The guide covers a number of paralysisrelated conditions, health management,
paralysis research, sport and recreation,
equipment and technology, etc.
Yes, You Can! a Guide to Self-Care for
Persons with Spinal Cord Injury (3rd
edition) published by the Paralyzed Veterans
of America (PVA) has been updated with
new chapters on pain, substance abuse,
exercise, alternative medicine, equipment
and staying healthy. It is available by
ordering item no. 5200-149 from PVA
Distribution Center, PO Box 753, Waldorf
MD 20604-0753, USA, www.pva.
org/publications/pdf/PubsCat.pdf, for
$US15 + $US15 postage and handling.
If you have any queries regarding the above
publications or any of the resources in our
library, which are available for loan to
readers anywhere in Australia, please call
Jane Robson 02 9661 8855, 1800 819 775
(for consumers outside NSW) or email
j.robson@spinalcordinjuries.com.au.
n
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 19
TELECOMMUNICATIONS
The Role of the
Consumers’ Telecommunications Network
Sarah Wilson, Policy Officer, CTN
T
he Consumers’ Telecommunications
Network (CTN) is a national coalition
of consumer and community organisations,
and individuals. We represent community
interests in the national policy arena on
telecommunications issues. Our work
involves advocating for better access,
quality of service and affordability of
telecommunications services for residential
consumers. Our national secretariat is based
in Sydney, as we have been for the past
decade or so we have existed. We are
largely funded through the Department of
A Bequest shows that
you care
Would you like to be involved in
helping people with severe physical
disabilities take their place in the life
of the community? And would you
like to do it without parting with your
money - or other assets - and without
needing to make a pledge?
Sounds too good to be true? Well, it
isn’t. Just a few words written into
your Will, or added to it as a codicil,
is all it takes. You can leave anything
of value: for example, money, shares,
real estate, works-of-art. Whatever
you leave to Spinal Cord Injuries
Australia in your Will helps a person
with a severe physical disability to
return to a satisfying and productive
lifestyle.
If you are leaving a bequest in your
Will to Spinal Cord Injuries Australia,
please let us know so that we can
thank you. Like to know more? Please
contact us on
Ph: 02 9313 9426
Fax: 02 9669 1761
Email: mfernandez@
spinalcordinjuries.com.au
20
ACCORD WINTER 2004
Communications, Information Technology,
and the Arts.
Our members are national and state
organisations representing a broad range of
consumers, including those from nonEnglish speaking backgrounds, consumers
with hearing impairment, indigenous
people, low income consumers, people with
disabilities, young people including
children, pensioners and superannuants,
rural and remote consumers, women, and
consumers in general.
We represent our constituents in a range of
ways, such as ensuring industry and
regulators incorporate the needs of
consumers into their decisions. One way
we do this is by representing consumers on
a number of committees in the Australian
Communications Industry Forum (ACIF).
ACIF is the industry body that determines
the self-regulatory regime at the national
level. Our active participation in debates
and policy development ensures the voices
of people with disabilities are effectively
heard in the area of telecommunications
regulation.
CTN regularly submits papers and reports
to government inquiries on matters of
relevance to consumers. Recent issues we
have commented on include the use of
customer information by telecommunications companies (including whether or
not this information should be available to
telemarketers), and technology that can
locate where mobile calls are coming from,
to help improve the handling of mobile
phone calls to the 000 emergency call
service. These issues are of direct concern
to all Australians and we are determined
that the views of all are adequately considered to ensure equitable telecommunications policy outcomes.
CTN holds an annual forum where we
discuss contemporary issues of importance
to consumers and the broader need for
consumer action with industry, other
consumer and community groups,
government representatives, and other
stakeholder groups. Our most recent
conference, which took place in Sydney in
March, focused on what the real advantages
are to consumers in the roll-out of new
technologies. Topics addressed at the
conference included the benefits of mobiles
with videos (3G), broadband internet and
how consumers are coping with new
technologies. Transcripts from the
conference are available on our website
www.ctn.org.au.
We recently launched a free weekly email
news service CTN WebNews. WebNews is
sent to subscribers via email and contains
breaking news, interesting links and
editorial content to keep recipients up to
date with relevant happenings concerning
consumers in the Australian telecommunications sector. Feedback from subscribers
tells us that WebNews is a valuable
resource, so please feel free to join via our
website.
If you are interested in becoming a personal
member of CTN or simply finding out more
about us, please visit www.ctn.org.au or call
our office on 02 9572 6007.
n
SCI Australia
Consumer Committee
Do you have a spinal cord injury or
similar disability and would like to
get involved in a quarterly forum for
consumers to discuss issues such as
provision of equipment, accommodation, personal care, home maintenance and modifications etc? If so,
please contact
Deni Gliddon - Rehabilitation and
Peer Support Manager
Tel: 02 9661 8855
(1800 819 775 for consumers
outside Sydney)
Email:
deni@spinalcordinjuries.com.au
TRANSPORT
Taxi!
Paul Versteege, Policy Coordinator
S
oon to kick off, the review of the Taxi
Transport Subsidy Scheme (TTSS) and,
also, the Wheelchair Accessible Taxi
Review, both in New South Wales. There
may never be a taxi when you want one,
but the same cannot be said of taxi reviews.
Both reviews are overseen by John Whelan,
who heads up the NSW Ministry of
Transport’s brand new Land and Community Transport Division.
The Ministry of Transport claims that 4 per
cent of eligible users account for 47 per cent
of the TTSS’s $15 million annual budget.
Why is this so? There are lots of theories
but no answers based on demonstrated fact.
The TTSS review will focus on how the
scheme is administered. At the moment,
Cabcharge collects information as part of
the payment system. This information is
limited to name, address and Medicare
number. The smartcard might improve
things and allow an understanding of why
the TTSS is used the way it is used, by
systematically collecting information about
each trip, including, one would hope, the
time the trip was booked for and when the
taxi turned up. It would also provide for the
ability to monitor what proportion of time
taxis are used by TTSS clients.
The smartcard is set to replace the paperbased system, which many claim exposes the
TTSS to widespread fraud. The Ministry of
Transport appears to share this view. It is
already talking about putting savings
through fraud prevention back into the
TTSS. It seems unlikely that this will result
in increased subsidies for customers. There
is talk of widening eligibility criteria to
include children under the age of five.
While the TTSS review is very limited in its
scope, the Wheelchair Accessible Taxi
Review is going to be as wide as it could
possibly be. It will focus on the limited
availability of accessible taxis, ways of
improving this situation according to an
agreed timetable and the financial
implications of this. An interim report is
scheduled for 30 August 2004 and the final
report for 30 October 2004.
It would seem that the data collected as part
of the smartcard trial would be extremely
relevant to the wider review. Given the tight
timeframe for the wider review, it is
doubtful whether the TTSS smartcard trial
will be able to adequately feed into it.
But it is also true that in the history of
bureaucracy no single review has ever
fixed all the problems that its terms of
reference stipulated it to address. SCI
Australia is participating in both reviews
and will drive home the message that all
taxis should be wheelchair accessible.
Accord is keen to receive your taxi
stories, so if you would like to share
them, please ring Paul Versteege on
1800 819 775 or email
pversteege@spinalcordinjuries.com.au.n
DIARY
1-7 August 2004: Continence Awareness
Week. Public seminar will be held by the
Continence Foundation of Australia and
ParaQuad NSW at Newington. For more
information call 02 8741 5699.
24-26 August 2004: ACROD Ageing and
Disability Conference, Wrest Point
Convention Centre, Hobart Tasmania. Tel: 03
6234 1424 fax: 03 6231 5388, mail@
conventionwise.com.au.
8-10 September 2004: ‘Diversity Within’
Disabled Peoples’ International (DPI) World
Summit 2004, Winnpeg, Canada. For more
information contact DPI Headquarters, 748
Broadway Winnipeg, Manitoba R3G 0X3
Canada, tel: + 1 204 287 8010, fax: +1 204
783 6270 www.dpi.org/en/events/events.htm,
summit@dpi.org.
15-17 September 2004: 7th Australian Injury
Prevention
Conference,
Mackay,
Queensland. For more information contact 07
3847 2055, www.aipn.com.au.
17-28 September 2004: Paralympic Games,
Athens, Greece www.athens2004.com.
18-20 September 2004: ‘On Common
Ground’ IDEAS Expo 2004 Dubbo, NSW.
For more information contact IDEAS Inc on
1800 029 904 or email ideas@ideas.org.au.
20-22 September 2004: 5th National NICAN
conference Perth, WA. For more information
contact 08 9284 4220, info@
nican.com.au.
21-22 October 2004: ‘Transforming
Communities’ conference 2004, Novotel,
Brighton-Le-Sands, Sydney. For more
information contact 02 9543-4240 / 0417 290
283 Michelle Hegarty OT Australia NSW
Scientific Program Co-ordinator or email:
hegartymd@ozemail.com.au.
10-13 November 2004: 13th National Conference on Incontinence: continence the ultimate
goal, Fremantle, WA. For more information
contact 07 3855 3711, www.
continence.org.au.
2-5 December 2004: The Other Film
Festival: Melbourne Disability Film Festival.
For more information contact 03 9699 8299
or email info@artsaccess.com.au.
8-12 December 2004: ‘Designing for the 21st
Century’ international conference on
universal design will be held in Rio de Janeiro,
Brazil. For more information contact 07 3379
9482 Margaret Ward, Convenor, Australian
Network for Universal Housing Design. n
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 21
NETWORKING
Regional Round-Up
Alex Traill
Illawarra Regional Manager
Phone: 02 4225 1366
alex@spinalcordinjuries.com.au
resources. Under the ‘old’ schemes many
operators built up large fleets of vehicles
that stand idle for long periods of the day
because of the usual small demand outside
peak periods.
The State Government provides approximately $1.6B in taxpayer monies to
subsidise transport through various
schemes such as the School Student
Transport Scheme, the Taxi Transport
Subsidy Scheme (TTSS) and generally via
fare subsidies on buses, trains and ferries.
Mr Whelan mentioned the ‘transport
disadvantaged’, including the elderly,
disabled and remotely located, as a group
to be considered in developing new
transport strategies and funding under the
transport subsidy schemes. Some of the
funding could go to broadening community
transport so that it can cater for those who
are not included in HACC transport
services. As we know the TTSS is currently
under review with major changes likely.
This scheme does not provide an effective
or affordable form of daily transport for
users, particularly in rural areas and those
travelling across the city. In Wollongong a
trip from the northern suburbs to a central
location such as Port Kembla Hospital can
cost over $80 each way meaning a $100
out-of-pocket expense for a TTSS user.
Following on from the Unsworth Report
on public transport there is to be an
overhaul of all schemes with a view to
greater efficiency and better utilisation of
A major point of Mr Whelan’s address was
the announcement of the appointment of a
transport coordinator for Wollongong
commencing 1 July. Part of the
On 29 April the Local Member of State
Parliament for Wollongong, Noreen Hay,
held a public transport forum in Wollongong. The forum was addressed by John
Whelan, Director of Community Transport,
who focused on the development of
integrated service plans for bus and taxi
services throughout the state.
Spinal Cord Injuries Australia’s Network
NEW SOUTH WALES
Sydney .................................. Little Bay ......................................... 02 9661 8855
Illawarra ............................... Wollongong ...................................... 02 4225 1366
Central West ......................... Craig Lees ................. 02 6372 1892/0427 289 003
Dubbo ................................... Wilson Te Whata ....... 02 6885 3428/0421 056 127
Hunter & Central Coast ........ Grant Nickel ............. 02 4925 3592/0413 367 515
New England ........................ Greg Gambetta .......... 02 6772 3267/0427 257 471
Northern Rivers .................... Paige Ridgeway ........ 02 6689 5935/0421 055 992
Peer Support Officers ........... Tony Leggett .................................... 0422 001 659
Rick Stewart ..................................... 0413 367 522
INTERSTATE
Northern Territory ................ Michele Castagna ............................ 08 8951 5177
Queensland ........................... Tony South ....................................... 07 3344 1098
South Australia ..................... Sharron Neeson ................................ 08 8355 3500
Victoria ................................. AQA Victoria ................................... 03 9489 0777
Western Australia ................. Graham Law .................................... 08 9527 9331
22
ACCORD WINTER 2004
coordinator’s role will be to gather public
views on transport issues for the
Wollongong LGA, and I presume
Shellharbour and Kiama LGAs, and convey
them to the NSW Department of Transport.
I assume transport coordinators will be
located throughout the state.
Craig Lees
Regional Officer
Central West and Orana
Phone: 02 6372 1892
Mobile: 0427 298 003
centralwest@spinalcordinjuries.com.au
Medical Spinal Outreach Program
Clinic in Dubbo
In late April this year, a flyer was sent out
announcing that a spinal clinic would be
held at the community clinic rooms at
Lourdes Hospital in Dubbo. The clinic was
to be held as part of the Medical Spinal
Outreach Program (MSOAP). In
attendance would be Dr Sue Rutkowski,
Director of Spinal Cord Injury Medicine,
Royal North Shore Hospital, along with
allied health professionals from the Spinal
Outreach Service (SOS) and the Rural
Spinal Cord Injury Project (RSCIP).
Referrals were initially very slow for the
clinic, only to see an eleventh hour rush on
places as word got around. Both days of
the clinic, held on 11 and 12 May, were
eventually booked solid. Apart from bookings from Dubbo, attendees also travelled
from outlying areas that included Wellington, Trangie, Gilgandra and Tottenham.
Wilson Te Whata, SCI Australia’s Regional
Officer for Dubbo, and I recognised this
event as an opportunity to facilitate some
peer support, particularly for those from
more isolated areas.
On the first day of the clinic we organised
a BBQ to encourage attendees to linger and
have a chat. Unfortunately many were not
in a position to stay for very long. As a
result, attendance was disappointingly
sporadic throughout the day. Nevertheless
it was a good opportunity to talk ‘shop’ with
some of the professionals in attendance
including Steven Lord (from Paraquad),
Adrian Byak (physiotherapist from SOS),
Cathy Skulander (clinical nurse from SOS)
and Rob Vandartel (rural spinal network
officer from Macquarie Area Health).
positive impact in the region with the
support we are starting to put in place.
The BBQ on the second day got off to an
awkward start. Apparently the hospital next
door had taken the gas BBQ I had been
using – it was ‘International Nurses Day’.
I spent the next couple of hours assembling
a camping gas BBQ and running around
town trying to buy cartridges for it.
Nevertheless, by 11am everything was
moving along nicely. Soon we had a dozen
or so people sitting around chatting and
eating.
I plan to continue establishing myself as a
point of contact for the medical profession
and organisations as well as those in the
community that need our expertise. With
Craig Lees at Mudgee and myself in Dubbo
I feel confident Spinal Cord Injuries
Australia will help change the quality of
life for many wheelies.
The second day eventually turned out to
be all that Wilson and I had hoped for as
far as peer support was concerned. As well
as providing peer support for many individuals with spinal cord injury, it was also
an opportunity to meet and chat with
families and carers. Many contacts were
made and many details were exchanged.
While consultations for the clinic finished
at 2pm, people continued talking until
about 3.30pm. It turned out to be a very
encouraging day indeed, particularly
considering many had long distances to
drive.
As far as the clinic was concerned, there
really were no surprises. For fifteen
consumers seen by the spinal clinic, the
recurrent issues were bladder care, bowel
care, skin care/pressure areas, seating and
equipment (or lack of due to PADP wait
times), sexuality and autonomic
dysreflexia. Many of the people attending
were long overdue for an assessment. The
fact that there is no urologist in Dubbo and
nowhere to get an MRI compounds some
of these issues.
Melissa McCormick, Project Manager for
RSCIP, reported that 24 allied health
professionals attended the education
session held on Wednesday afternoon.
Those in attendance included occupational
therapists, physiotherapists, community
nurses and workers from the Commonwealth Rehabilitation Scheme.
The GP Education Night, held as part of
MSOAP, reported 10 doctors in attendance.
Wilson and I are keen to maintain contact
with many of the people we met through
the spinal clinic. Hopefully these clinics
Recently a spinal clinic was held in Dubbo
(see Craig Lees’ article) which was a great
success and hopefully the first of many. It
is much easier and cheaper for people to
see a spinal specialist locally than to make
long trips to Sydney!
Wilson Te Whata at the first Dubbo spinal
clinic.
will become regular events, as there were
some interested consumers who were
unable to attend.
Anyone unable to attend who would like
to know more about the clinic or anyone
interested in getting involved in an informal
peer support network can contact Wilson
or me on 02 6885 3428 or 02 6372 1892
respectively.
Wilson Te Whata
Regional Officer, Dubbo
Phone: 02 6885 3428
Mobile: 0421 056 127
dubbo@spinalcordinjuries.com.au
I started with SCI Australia in February
2004 and it has been a big learning curve
for me and a responsibility I do not take
lightly. I have met some terrific people in
that time and feel privileged to have this
opportunity. I have become aware of the
great need in my region for the support of
an organisation like SCI Australia and its
workers.
I have started a support group in Dubbo and
we plan to meet once a month. This has
been a great blessing to me personally and
to others. We all have much to share and
experience from our own personal
circumstances to help and encourage each
other.
The best way of learning ‘tricks of the trade’
so to speak is from those who are really in
the know, those who have been wheelchair
users or injured for some time. They have
a wealth of knowledge.
I would like to be an influence in my
community. I feel we can make a real and
Greg Gambetta
Regional Officer, New England
Phone: 02 6772 3267
Mobile: 0427 257 471
newengland@spinalcordinjuries.com.au
Our service in the New England region has
seen a significant increase in information
inquiries and requests for advocacy
services.
Glen Innes
In conjunction with the local access group,
SCI Australia is looking to develop an
access map for the Glenn Innes area. We
will be recruiting volunteers to conduct an
initial survey of the CBD and recreation
facilities and expect that this project will
take 6-12 months to complete.
The Glen Innes Council was dismissed by
the State Government a few months ago,
however the Access Group has been
assured by the administrator that funds
already allocated for the project will
continue to be made available.
Armidale
The Armidale Interagency Disability Expo
has been scheduled for Wednesday 20
October 2004, to be held once again at The
New England Girls School. I have been
invited to co-chair the planning subcommittee.
The National Disability Abuse & Neglect
Hotline information sessions were held in
mid March.
Armidale Dumaresq Council’s Department
of Planning and Community Services is
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 23
currently working on a Community Social
Plan for Armidale with the final report due
to be completed by June 2004.
Grant Nickel
Regional Officer
Hunter Valley and Central Coast
Phone: 02 4925 3592
Mobile: 0413 367 515
hunter@spinalcordinjuries.com.au
Taxis are Back on the Agenda
The provision of wheelchair accessible
taxis (WATs) in the Greater Newcastle
region is the worst in the State of NSW.
There are only four WATs to serve the half
a million people living in the Lake
Macquarie and Newcastle municipalities.
People in the Greater Newcastle region who
rely on WATs are constantly frustrated by
the lack of service. Many would have little
or no hesitation in arguing that their quality
of life and human rights are greatly
diminished due to having such a second
class service which people without a
disability do not experience.
However, recently there have been some
positive signs that the State Government
who recognises the problem with WATs in
Newcastle and has expressed a desire to
address the issue. In addition, the State
Government has indicated that by using
Newcastle as a test case, lessons may be
learnt in addressing the issue of improving
WAT service provision throughout the state.
Factors driving the need for the WAT
service to be improved in the Newcastle
regions are coming from two interests but
both involving the State Government. The
first is the national deregulation of the taxi
industry where the Federal Government has
requested and placed the responsibility on
state governments to introduce and enforce
deregulation or be fined heavily. In light of
this, the State Government has set the target
that in 2008 the waiting time for a WAT
should be the same as for a standard taxi.
The second factor is a new initiative by the
State Government to improve the provision
of public and community transport as a
whole for the Lower Hunter. The State
Government, having identified service gaps
and inequities within the current system
(with WATs being on top of the agenda),
goes on to say that for the amount of money
spent on transport it believes a better, more
tailored system should be available to the
public.
24
ACCORD WINTER 2004
Unlike the 2001 HREOC inquiry into the
delivery of WAT services I believe the
initiatives taken up by the State
Government will result in better service
provision. That is because HREOC does not
have the constitutional power to make
organisations within the taxi industry
change their operations. HREOC can only
make recommendations. However, State
Governments do have the legal power to
effect change as well as a very big incentive
not to be fined by the Federal Government
for not deregulating.
Revised LEP and DCP for
Lake Macquarie
Lake Macquarie Council recently gazetted
its Local Environment Plan (LEP) and
Development Control Plan (DCP) with the
inclusion that all new commercial and high
density residential development applications will require an accredited access
auditor to inspect the plans and approve the
design of a dwelling, ensuring access under
the DDA.
Lake Macquarie Council has joined
Newcastle City Council (NCC) by introducing this measure. NCC has had its
policy to ensure access for new
developments for just over a year and the
results are now coming to fruition. In
Newcastle, where there has been a quick
turnover of development application
requests for new works (for example along
areas designated for restaurants and shops),
the streetscape is evolving becoming more
accessible and it is hoped that the same will
happen in the Lake Macquarie Council
area.
Paige Ridgeway
Regional Officer, Northern Rivers
Phone: 02 6689 5935
Mobile: 0421 055 992
northernrivers@spinalcordinjuries.com.au
in the Clarence Valley than access alone”. It
is with this in mind that Phyllis is putting
out a call for expressions of interest to form
a local networking group for people with
physical disabilities. The aim of this group
would be to get together on a regular basis
in order to hold discussions and take action
with regard to issues that matter to people
with physical disabilities in the region.
Living in country regions can get a little
isolating at times, and a group like this would
provide an excellent opportunity for people
to get together and support each other a little
more.
Phyllis hopes to kick off the group in
association with Spinal Injury Awareness
Week towards the end of the year. If you’d
like to become involved in the group, please
contact Phyllis on 02 6642 6079.
SCI Australia Trains at NOWSA
Conference
A group of SCI Australia staff recently
attended Certificate IV in Assessment and
Workplace Training sessions and we’re
wasting no time in putting them to use! ‘D’
Day at the National Organisation of Women
Students Australia (NOWSA) conference in
Lismore is 14 July. The day has been titled
‘Smashing Stereotypes’ and will highlight
issues relating to women with disabilities,
such as disability rights and pride, disability
awareness, and mental health issues including depression and eating disorders. The
day will include a plenary session with Sue
Salthouse from Women With Disabilities
Australia. Organisers Jacki Brown, Shari
Webb and I will then hold a workshop
covering disability cross cultural awareness
and the social model of disability. The whole
conference looks to be fantastic and 14 July
is undoubtedly the pick of the bunch.
‘NOWSA 2004’ is open to women from all
walks of life. You can contact me on 02 6689
5935 if you have anything to contribute, or
would like to attend.
Networking Group for Grafton
Byron Bay Council Launches Beach
Access Ramp
There’s a new resident in Grafton, and the
town looks never to be quite the same again!
Phyllis Harding, long time SCI Australia/
AQA member and former Paraquad volunteer, has recently relocated to Grafton from
Bundaberg in Queensland. Phyllis has an
enormous amount of experience in dealing
with issues that relate to people with physical
disabilities, and has wasted no time in
becoming involved with local groups, such
as the Grafton Access Committee. However,
Phyllis believes “there’s a far broader range
of issues affecting people with disabilities
On 20 May, Byron Shire Council and the
Byron Bay community launched their first
beach access ramp at Clarke’s Beach, Byron
Bay. The ramp is a fantastic structure and is
the result of nearly ten years of the joint
efforts of the Byron Shire Access Committee
and Byron Shire Council. Mayor Jan
Barham said that the ramp was just the
beginning and that the council aspires to
similar ramps being present at all major
beach access points in Byron Bay. The
launch of this particular ramp demonstrates
(continued next page)
NETWORKING
National Round-Up
Nazim Erdem
A.Q.A. Victoria Ltd
Phone: 03 9489 0777
nazimerdem@aqavic.org.au
Australian Grand Prix
A month leading up to the Australian Grand
Prix, AQA Victoria’s information
department started receiving inquiries from
our members and interstate wheelchair
users about the upcoming Formula One
Grand Prix. Questions ranged from
accessible accommodation while staying in
Melbourne, the accessibility of the track
and other events to go to while in
Melbourne at Grand Prix time.
To find out more information about
wheelchair access we rang the Melbourne
Grand Prix Hotline. They told us the event
was wheelchair accessible and as in
previous years, there are three special
viewing platforms set aside for people with
a disability.
One major concern of members was that
they had not received their Companion
Card yet and needed their carer to attend
the event with them. The hotline was aware
of the new Companion Card scheme and
that not everyone would have received their
cards yet. It advised that it was necessary
only to see a concession card when the
(continued from previous page)
council’s commitment to working hard to
achieve objectives associated with its
disability action plan, and we congratulate
Byron Shire Council and the Byron Shire
Access Committee on seeing this vision
through to completion. People wishing to use
the ramp to access the beach can obtain a
key and instructions for the use of the beach
wheelchair from Clarke’s Beach Caravan
Park.
n
ticket was purchased. That was great news
because the situation is not the same at the
MCG and Telstra Dome where you MUST
have a Companion Card if you want a carer
admitted free of charge with you.
A number of AQA employees and motor
sports enthusiasts decided that we would
meet at the track on the Saturday morning
and find a good viewing position where we
could all sit together. We used various
means of transport. Free accessible buses
ran from Olympic Park and Spencer Street
Station to the Albert Park race track. New
accessible trams could be used to get to the
track as well on route 109 from Box Hill
through the city to Port Melbourne going
past Albert Park.
One of our group was originally going to
park in the city and catch an accessible bus
to the track but thought he’d try his luck
and find parking next to the track
somewhere, even though there were very
tight parking restrictions in the area while
the race was on. Sometimes it does pay to
try your luck because he managed to get
past two police road blocks and park right
outside one of the track entrances.
Once inside the gates, we headed towards
one of the three accessible viewing
platforms. Getting to the platform wasn’t
easy for those using manual chairs as we
had to push over grass and patches of sand
but we eventually got there thanks to Jody
and Aliza.
Pushing up onto the viewing platform was
not a struggle at all because the gradient of
the ramp was fine. The platform was about
two metres off the ground and the view of
the track was fantastic. Thought had been
put into the location of the viewing
platforms and there was plenty of room. We
could definitely see a lot more from the
platforms than able-bodied people could
see from the ground. The atmosphere on
the platforms was great, I found everyone
to be very friendly and helpful. Only
wheelies, their families, friends and carers
were allowed on the platforms. There were
also track attendants on the platforms to
help.
The Australian Grand Prix Association
contracted Wheelabout Wheelchair
Accessible Van Rentals to take wheelies
around the track to different locations, free
of charge. Peter, Naz and Ronin took the
opportunity to take a ride in one of their
vans and saw some sights that they
wouldn’t have been able to before. Their
forty minute van adventure gave them the
chance to see the track and grandstands
from the inner side (lake side) of the track
by way of a tunnel under the track. Seeing
all the V8 super-cars racing teams pits and
the logistics side of things was an eyeopener.
It was also great to see other members of
AQA enjoying a great day and getting out
and about.
Full marks go to the Grand Prix Association
for providing good access for wheelchair
users.
Michele Castagna
Network Officer in
Northern Territory
Phone: 08 8951 5177
michele.castagna@health.nt.gov.au
I recently went to see Intimate Encounters,
a photographic exhibition that explores
sexuality and disability. The exhibition has
toured internationally and began its tour of
the NT in Alice Springs.
The exhibition has created a great deal of
interest, debate and controversy. Many
people find the subject confronting and
disturbing and one they would rather not
acknowledge.
The grand opening of the exhibition was at
Charles Darwin University (CDU) Library.
While this was not the ideal location for a
photographic art exhibition it did have
several advantages especially the fact that
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 25
the library is well utilised by both students
and the general public.
The photographer, Belinda MasonLovering, has travelled around Australia
over the last two years collecting images
that examine the relationship between
sexuality, self image and people with
disability. Mason-Lovering has captured
images that reflect the personal emotional
journey of people with disabilities. The
exhibition has allowed the people involved
to show a side of themselves which is not
often put on display. The images are both
powerful and inspiring and it is extremely
brave of the subjects to put themselves on
public view.
It was a brave and bold move by CDU to
hold the exhibition in the library,
considering the numbers of students at
secondary level who use the venue as a
place of study. A book was made available
for comments by viewers. These were very
interesting, here are some of the students’
remarks.
•
•
•
•
•
•
“Makes me uncomfortable”
“Pornography is NOT art!”
“…perverted, interesting, meaningful,
in some ways too revealing.”
“The reason so many people have a
problem with this incredibly insightful
and REAL exhibition is because these
human bodies aren’t hairless, size 10
supermodels!! Get educated and learn
anti-discrimination.”
“WOW! Long time coming. I wish my
daughter who has a disability was here
to see this.”
“Great exhibition – interesting
diversity of people and perspectives!”
The following week I facilitated a public
forum at CDU relating to disability and
sexuality. The afternoon consisted of
personal views and experiences from local
and interstate people with disability,
question and answer time and a section for
participants to express their points of view.
Kiersten Fishburn, Development Officer,
Accessible Arts (New South Wales) gave a
wonderful presentation titled Disability and
Photography: from objectification to
participation which was truly memorable.
Ashley Heenan a wheelchair user from
Victoria and a participant in the
photographic exhibition with his wife,
spoke of his experiences and emotions in
undertaking the photographic session.
Local content was provided by two people
with disabilities, Jan Richardson who spoke
of Learning and Loving Single Handedly
and Annette Smith who spoke of Enabling
26
ACCORD WINTER 2004
Relationships. The sharing of personal
experience can be most moving and
educates the community in a more profound
way than an academic dissertation.
•
I would urge all readers to take the
opportunity of seeing this exhibition should
it ever come to their area.
Although consultations continued until
April, it is already clear that the major areas
of concern are:
Sharron Neeson
Network Officer in South Australia
Phone: 08 8355 3500
SharronN@paraquad-sa.asn.au
Draft Disability Services
Framework 2004-2007
In South Australia, there has been an
extended consultation period following the
release of the Disability Services
Framework draft document in October
2003.
The framework is presented as a new vision
of disability services in this state with
several key policy components providing
the foundation for this vision:
1) Community development (the process
by which the community’s formal and
informal helping resources are
gathered together to assist vulnerable
citizens to participate in community
life) is undertaken as the core concept
in achieving disability services.
2) Citizen aspirations for people with a
disability are enhanced through
specialist disability services, together
with other specialist and mainstream
agencies.
3) The legislative framework for
disability services reflects the
intentions of the new strategic
directions.
The following underlying needs were
identified in the framework:
•
•
•
•
directions for disability services that
extend the Disability Services
Planning and Funding Framework
2000-2003;
a legislative framework for disability
services that is strengthened to ensure
compliance with standards;
the choice to live in community
housing for the 940 people with a
disability presently in inappropriate
institutional care;
a single system of options
coordination to promote equity and
access across disability groups; and
clarification of service responsibilities
for government and non-government
agencies on behalf of families/carers
and individuals with a disability.
1) What constitutes personal support and
should the disability services program
limit funding to personal support?
2) Is one options coordination agency
(case management) the best structure
for disability services and how would
it impact on consumers?
3) What are the implications of
transferring non-personal support
activities and funding to mainstream
agencies?
At the time of writing it is not possible to
discuss the outcome of the consultation
process. In the next Accord I should be able
to provide information on the final
Disability Services Framework and its
impact on disability services in South
Australia.
Tony South
Network Officer in Queensland
Phone: 07 3344 1098
Mobile: 0407 670 892
aes@pbfbne.asn.au
Improved Chances – Spinal Injury
Unit Beds
Over recent times it has been with great
distress and sadness that I have known of a
number of Queenslanders with spinal cord
injury or newly acquired injury who have
been unable to gain admission to the
Princess Alexandra Hospital Spinal Injury
Unit due to the lack of beds. Whilst the unit
used to have 40 beds, Queensland Health
reduced it to 36 about two years ago. This
year it has been returned to 40 beds and an
additional 4 emergency beds were available
until 1 July 2004. With an average 84
traumatic spinal cord injuries in
Queensland each year, and exceptionally
long waiting times for spinal cord injured
people with chronic pressure areas, it is
hoped that the Health Department has a
heart and makes the four temporary beds
permanent.
More Funding for Disability in
Queensland
The Beattie government announced in
February 2004 an additional injection of
$65 million to be spent in the disability
(continued next page)
MISS MEGABYTE
Searching the Internet
This Tip will help you narrow down your
internet searching:
•
Get to know www.google.com if you
haven’t already discovered it.
•
To narrow down your internet search,
enclose any search phrases in speech
marks. e.g. “Business Essentials”.
That way, you’ll only get pages with
the actual term ‘Business Essentials’
(continued from previous page)
sector over the next three years. $15.5
million has been earmarked for Adult
Lifestyle Packages. How much of the
balance will end up meeting the needs of
people with high level spinal cord injury?
•
•
Australian Federation of Disability
Organisations (AFDO)
The inaugural board meeting was held in
January 2004. The aim of the federation is
to champion the rights of people with
disability in Australia and to help them
participate fully in community life. AFDO
covers the full range of disabilities, spinal
injury being represented by Maurice
Corcoran, Director Physical Disability
Council of Australia. For more information
contact Sue Egan pdca@ozemail.com.au or
see website www.disfed.org.au.
Peer Support for Queensland
Most states take for granted peer support
for people with paraplegia or quadriplegia.
This is not the case in Queensland as until
now it has been provided on an ad hoc
voluntary basis by caring people who find
some time to visit the spinal injury unit. At
last the Paraplegic & Quadriplegic
Association of Queensland has received
funding to provide two peer support
positions. Any Queenslander interested in
applying should call 07 3391 2044 or email
pqaq@pqaq.com.au.
n
appearing. Without the speech marks,
you’ll get lots of pages with the word
‘Business’, lots of pages with the term
‘Essentials’, and then pages with the
term ‘Business Essentials’.
•
Use a plus sign with any words that
MUST appear in the search results.
Similarly, use a minus sign with any
words that MUST NOT appear in the
search results. (There is no space
between the symbol and the word) e.g.
“real estate listings” +hawthorn richmond.
•
When you come across a page that
you will be visiting often, make sure
you bookmark it by adding it to your
list of Favourites. With the page
displayed, simply go up to the
Favourites menu and choose ‘Add to
Favourites’. If you are like me and
you have an endless list it would be a
good idea to sort them into Folders
too.
My Website Tip is:
Re-live your childhood, or impress your
own children by visiting www.howstuff
works.com to discover the mystery behind
all sorts of everyday things, like How
Brakes Work, How 4x4s work, How hypnosis works, even How e-commerce works.
Creating a Shortcut on the Desktop
You already have a few shortcuts there, but
I bet you don’t use half of them! Drag those
ones into the Recycle Bin by just moving
your mouse to them, clicking and holding
down the left mouse button and dragging
on top of the Bin.
Now, put some useful shortcuts there - to
documents you need to access regularly,
programs you use all the time and photos
you love to revisit:
•
Press Windows Key and M to
minimise all windows and get back to
the Desktop
•
•
Right mouse click anywhere on the
Desktop and choose New from the
shortcut menu, then Shortcut.
Click Browse to locate the program,
document or photo you want to use
and click it, then click OK
Click Next and give your shortcut a
name if you like
Click Finish, and there you have it!
Remember, this is just a shortcut to the
original file. If you want to get rid of it, drag
it to the Recycle Bin and you’ll still have
the original in its original location.
n
Public Education
People with disabilities are consumers
of goods and services but not all
businesses/organisations are tapping
into this market. Spinal Cord Injuries
Australia’s Public Education Training
will help you attract more clients by:
•
Developing a corporate culture
that promotes equity and access.
•
Removing the physical and
attitudinal barriers that prevent
people with physical disabilities
from making full use of your
services.
•
Enhancing your ability to tap into
this niche market of 1.5 million.
•
Increasing your staff’s knowledge
of the needs of people with
disabilities as they relate to your
business/organisation.
•
Meeting the requirements of the
Building Code of Australia (BCA)
and DDA.
Contact Public Education Coordinator 02 9661 8855 or 1800 819 775
or email
education@spinalcordinjuries.com.au
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 27
and gives a much more rewarding internet
experience. It is now more important than
ever to keep your operating system and
virus protection up to date, and
downloading these updates (often several
megabytes) can be a test of patience on a
dialup system.
Head Control Options
I have no arm movement and I can only
move my head. My voice is also not good
because of breathlessness. What possibility
is there for me to be able to use a computer?
Graeme Smith answers readers’
queries on computer and technologyrelated subjects. You can contact him
at Ability Technology or through
Accord.
Ability Technology undertakes
assessments of the computer needs of
people with disabilities. These
assessments are provided for legal
cases, insurance companies and
rehabilitation organisations.
The Centre, which has its own
therapy and technical staff, also
undertakes research into issues
related to disabilities and
technology. It is based at Seaforth in
Sydney.
Phone 02 9907 9736,
Fax 02 9907 9599,
Email graeme@abilitytech.com.au
Dialup or Broadband?
My internet usage has increased and I need
to upgrade my access. I am considering
getting a second phone line or else
upgrading to broadband (cable). Is
broadband worth the extra cost?
In your case, broadband internet connection
will actually cost you less. There are three
costs associated with dialup internet access:
the cost of an additional phone line (say
$25 per month), the cost of dialup access
through an internet service provider (ISP)
at say $25 per month, and then the cost of
the phone calls to access the service,
including redial after drop-outs (say 3 calls
a day, at 25c per call, making $22.50 per
month). The total, $72.50, is above the cost
of most broadband options.
But cost is not the only factor. Cable
internet is many times faster than dialup
28
ACCORD WINTER 2004
There are basically three functions required
for computer control: moving the cursor,
activating mouse clicks and entering text.
Each of these is possible, even if you can
only move your head. A number of devices
use infrared systems to control cursor
movement (such as the SmartNAV,
HeadMouse Extreme and Tracker). You
wear a sticky dot on your head or glasses,
and this acts as a reflector for the infrared
beam. Through this system your head
movements are translated into cursor
movements on the screen. So far so good.
To activate mouse clicks you need either a
switch (in your case, a sip/puff switch may
be the best option) or else a program that
activates ‘dwell-clicking’ – automatic
clicking after a pre-set period of time. These
programs allow you to select whether your
next click will be a left click, right click,
double click or click-lock (drag).
To enter text you would use your mouse
control system in conjunction with an onscreen keyboard. These give you an image
of a keyboard on your screen. You point to
the letters you want in order to create text.
Your selections are received by the
computer as if you had typed them using a
standard keyboard. Some of these onscreen keyboards also incorporate functions
such as word prediction, to speed up the
creation of words and sentences.
The systems outlined above are not perfect,
but they allow a person with just head
movement to control most computer
functions independently.
OTHER NEWS
Cheap Environmental Control
Option
We have been testing a cheap device that
gives the user voice control of key
household appliances and functions.
Commands are trained into the VoiceMe
from an existing remote. Up to three
functions can be linked to an individual
voice command, and this enables two or
three stage commands to be stored, or three
devices to be trained with the same
command. Up to 30 voice commands can
be recorded.
We used a Marmitek 8-in-1 remote control
device to train some X-10 commands.
Without getting too technical, these
commands (with the appropriate modules)
enable control of lights, fans, doors and
other household functions that use mains
power.
Finally we used the VoiceMe to dial prestored numbers in the TS Phone and TS
Phone Controller. This gives some voice
control of phone functions.
At a cost of $239, the VoiceMe offers a basic
but effective environmental control option.
We have a full analysis of the product on
our website (www.ability.org.au) and have
also prepared some guidelines on how to
get the most out of it (just email info@
ability.org.au).
Printer Cartridges
It is no secret that while ink jet printer prices
have come down, the cost of ink cartridges
remains very high. But there are further
problems. Ink replacement warnings are
often very premature, prompting users to
replace ink unnecessarily. To give an
example, we started receiving warnings
about requiring a replacement colour ink
cartridge in October 2003. It worked
happily for a further five months before
requiring replacement! Some brand
printers don’t let you keep printing once the
warning has been displayed – these brands
should be avoided. So keep a spare cartridge
on hand, but don’t be bullied into replacing
your old one prematurely. And don’t forget
– if your black cartridge runs out, you may
be able to get out of trouble by changing
your text to say dark blue, and then printing
it out with the colour cartridge.
Virus Protection
The recent spate of virus infections has
caused trouble to many computer users. You
may not have noticed, but new computers
usually now only come with 3 months of
anti-virus protection, instead of 12 months.
This has meant that some purchasers have
been caught out, not expecting to have to
update their virus protection so early. Don’t
take risks – keep your subscription up to
date. It will save you anguish and great
inconvenience later.
n
NEWS UPDATE
Making Connections Update
N
ews from the website established
following the Premier’s Forum on
spinal cord injuries and conditions in 2003
(www.spinalforum.com/) includes details of
the inaugural Making Connections online
forum which was held from 24-30 May
2004. The forum received over 160
messages during the week when seven forum
guests were available to respond to questions
and stimulate discussion between scientists
and the SCI community.
Discussion ranged throughout the week from
the types of research currently underway in
Australia and overseas to alternative
therapies, fitness and wellbeing. The full
discussion can be viewed online at
www.spinalforum.com/bulletinboard/.
Latest Research and News
Nasal cells key to paralysis cure: Sunday
Herald, 6 June 2004 www.sundayherald.
com/42401
‘Scaffolding’ hope for Parkinson’s: AAP, 5
June 2004 http://news.ninemsn.com.au/
article.aspx?id=9781
Community Survival Kit
Community Survival Kit—a
collection of key contact details and
information sources for people with
SCI and similar conditions. Copies of
the Kit are available from SCInfo tel:
02 9661 8855, 1800 819 775 (for
consumers outside Sydney) or
w w w. s p i n a l c o r d i n j u r i e s .
com.au/publications.
UN treaty on rights for people with
disabilities may be ready for signing next
year: UN News Centre, 4 June 2004 www.
un.org/apps/news/story.asp?NewsID=
10960&Cr=Disabled&Cr1=law
encouraged to grow into the cell, and out of
the cell into the spinal cord, using a
combination of drugs including rolipram,
already clinically approved for treatment of
depression and used in clinical trials for MS.
The British government is to pump £16.5m
into stem cell research to treat disease: BBC
News, 27 May 2004 http://news.bbc.co.uk/
1/hi/health/3752651.stm
Dr Mary Bunge, who has been with the
Miami Project for more than 15 years, said
of the findings, “This is the most exciting
and important work that has been done in
my laboratory.”
The world’s first stem cell bank has been
officially opened in the UK: BBC News, 19
May 2004 http://news.bbc.co.uk/2/hi/health/
3725935.stm
Australian Researcher Leads
Breakthrough in SCI Treatment
An Australian researcher, Damien Pearse
Ph.D, working with Mary Bartlett Bunge
Ph.D and colleagues at the Miami Project
to Cure Paralysis, has found that a new
combination therapy restores 70 per cent of
normal walking function in injured rats. The
findings have been published in the June
edition of Nature Medicine. The study tested
an innovative treatment that combined
Schwann cell grafts with the administration
of a cell messenger molecule (cyclic AMP)
and rolipram in animals with contusion
injuries. Cyclic AMP influences the inner
workings of cells and is important for
guidance of axons and for their growth
within inhibitory environments. Rolipram
prevents the breakdown of cyclic AMP.
Speaking on ABC Radio, Dr Pearse
described the treatment, “What we do is, we
transplant – that is, put inside the spinal cord
– cells from the nerves in your arms and legs
and these form a bridge upon which nerve
fibres can grow.” These fibres are then
While trials on humans may be some way
off Dr Naomi Kleitman, from the US
Department of Health, has called the
advance “very important” and said that the
therapies tested in this study were selected
for their likely feasibility in humans.
From the Miami Project to Cure Paralysis
website www.miamiproject.miami.edu/
news.asp
n
Classifieds
1996 Toyota Hi Ace: 5 speed manual,
Tieman hydraulic hoist, 2 x
wheelchair restraints, quick release
seats, dual air con, power steering.
200,000 kms. $17,000 ONO. Contact
Dennis 02 4777 4334.
Deceased sale: near new manual
lightweight folding wheelchair, fold
down backrest, attendant brake
control. Purchased Jan 2004. Contact
Mike 0410 446 205.
Wymo hoist: Rarely used. Contact
Mike 0410 446 205.
New Members
Gary Bridger
Tom Armington
Deborah Worsley
Sonja Ckorovska
Rod Genders
COFFS HARBOUR
STONEVILLE
MAROUBRA
KOGARAH
ADELAIDE
NSW
WA
NSW
NSW
SA
Brett Grant
Kim Kwak
Rodney Benning
Mick Parr
Ken Bucci
ALEXANDRIA
CAMPSIE
MARRICKVILLE
NIMBIM
CUDMIRRAH
NSW
NSW
NSW
NSW
NSW
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 29
INNOVATIONS
New Technologies
Voice Activated Infrared Remote
Controls now in Australia
Step into the future with MicroGram’s new
voice activated infrared controllers. Two
models are currently available, allowing
voice commands to control any device
using an infrared remote control. These
infrared controllers ‘learn’ from other
remotes and issue the signal when triggered
by a voice command.
•
•
•
personalized voice recognition;
considerate auto mute function; and
intuitive easy operation.
Available from:
MicroGram Computers
1/14 Bon Mace Close
Berkeley Vale NSW 2261
Phone: 02 4389 8444
Fax: 02 4389 8388
www.mgram.com.au
The Independence iBOT
The Independence iBOT 3000 is a new
mobility device unlike any other, with the
ability to climb stairs and curbs, raise you
up to eye-level and navigate uneven terrain.
Cat No. 9179 (RRP $199) has basic remote
control functions. However it also allows
voice commands to be issued with the press
of a button. The operator can store up to
sixty commands or thirty for two separate
people. It features:
•
•
•
•
•
•
•
voice & manual control of home
electronics;
universal infrared learning capability;
the operation of 8 home electronic
devices at the same time;
use by one or two users;
intuitive and instant operation;
user-friendly design; and
considerate auto mute function.
The five functions of the iBOT include the
ability to:
Move around as you would in
a traditional power chair.
Climb up and down stairs,
with or without assistance.
•
•
•
•
30
remote voice control of home
electronic devices;
universal infrared learning capability;
omni-directional IR emission;
operation of 3 home electronic
devices at the same time;
constant alertness to voice;
ACCORD WINTER 2004
It can also be controlled by an assistant using
the detachable joystick to manoeuvre it
unoccupied into a vehicle for transport.
The iBOT Mobility System contains an
integrated combination of sensor and
software components that work together to
mimic the principles of human balance. The
electronic balance system is customprogrammed and calibrated to the user’s
centre of gravity, allowing the device to
constantly realign and adjust its wheel
position and seat orientation, providing safety
and stability.
Cat No. 9180 (RRP $239) enables true
hands free voice activation. One voice
command is given to initiate the unit and
another voice command to issue the
infrared signal. Thirty voice commands
with three infrared signals for each can be
stored. It features:
•
Climb curbs and easily traverse
grass, gravel, sand, mud,
puddles and other forms of
uneven terrain.
Move around at a standing
person’s eye-level.
The iBOT has been designed by Independence
Technology, a company of Johnson & Johnson.
The wheelchair would be expected to retail at
around $A52,000! You can see more details
at www.independencenow.com.
n
Complaints Resolution and
Referral Service (CRRS)
CRRS is a service that helps people with disability sort out
complaints they may have about disability employment and
advocacy services funded by the Commonwealth
Department of Family and Community Services.
The CRRS does not take sides when looking at a complaint
and will get both sides of the story.
There are a number of ways that the CRRS can address a
complaint. The CRRS can:
•
Encourage the person to take their complaint directly
to the service
•
Have a meeting where the person making the
complaint, the service and the CRRS are present to
talk about the problem (conciliation)
•
Conduct a formal investigation.
Once the investigation or meeting about the complaint is
complete and the ideas on how the complaint can be
addressed are written down, the CRRS will call the person
making the complaint and the service within 3 months to
make sure that the ideas are implemented.
If you want more information about the CRRS, or would
like to make a complaint they can be contacted on:
Phone: 1800 880 052
TTY: 1800 301 130
Fax: 02 9318 1372
Email: crrs@pwd.org.au
Postal:
Locked Bag 2705 Strawberry Hills NSW 2012
Are you sick of being at home?
Why not come along to the SCI Australia Social Groups
for people with spinal cord injuries and
other similar disabilities?
We gather monthly.
Activities include visits to the movies, cafes, parks,
pubs, beaches, museums and more!
For Sydney social groups please contact
Deni on 02 9661 8855 or Tony on 0422 001659
for more information
For those people who live in the Wollongong area
The South Coast Southern Highlands regional office
situated at 208 Corrimal Street Wollongong
offers peers support and social activity every
Thursday between 10.00am and 4.00pm.
Spinal Cord Injuries Australia
SERVICES DIRECTORY
REHABILITATION AND PEER
SUPPORT SERVICES
can provide assistance to you in various ways: peer support,
individual advocacy and information, community support,
group activities, professional support to rurally-based allied
health workers. Our team is based at Little Bay and can visit
you in hospital or at home (Greater Sydney metropolitan area).
Country visits and clinics can be arranged through your local
Spinal Cord Injuries Australia Regional Officer or the
Rehabilitation and Peer Support Manager. Telephone
02 9661 8855.
ACCESS CONSULTANCY
delivers access auditing, building design solutions, training
and education for the government, commercial and community
sectors. Our fee for service consultancy provides expertise in
the assessment of public buildings, commercial and community
premises, sporting facilities, streetscapes and plan appraisals.
We also conduct disability awareness and access training
tailored to your specific needs.Telephone 02 9693 1666
POLICY AND INFORMATION
POLICY COORDINATION focuses on the development of
disability specific social policy. The unit also works in
partnership with Physical Disability Councils and other bodies
to advocate these policies on a systemic basis.
INFORMATION SERVICE provides you and your family,
carers, professionals and the general public with a wide range
of information on severe physical disability and services. The
information service also helps people with individual advocacy
issues to find representation through specialist disability
advocacy services. What? Where? Why? How? Contact
SCInfo. Telephone 1800 819 775 (outside Sydney) Sydney
02 9661 8855.
RESIDENTIAL SERVICES
provides transitional and respite accommodation in Sydney
and Coffs Harbour. Call for availability. Telephone 02 9661
8855.
WORKFORCE
is your one stop shop for vocational services - from work
assessment, career guidance, vocational training, job placement
to post-placement support for people with physical and sensory
disabilities. Employment is available in data processing at
Spinal Cord Injuries Australia. Telephone 02 9669 5277 or
TTY 9669 5812.
REGIONAL AND NATIONAL NETWORK
Spinal Cord Injuries Australia’s advocacy and community support services are available throughout NSW through a network
of Regional Officers. Spinal Cord Injuries Australia stays in
touch with issues that matter to you around Australia via a
network of national representatives in the other states and
territories. See page 22 for contact details.
JOURNAL OF SPINAL CORD INJURIES AUSTRALIA 31
Postal Address: PO Box 6440, South Sydney Business Hub, Alexandria 2015
Phone: (02) 9693-1666
Free Call: 1800 819 775
Web Site: www.spinalcordinjuries.com.au
Fax: (02) 9669-1761
ABN No: 93 001 263 734
Patron: His Excellency Major General Michael Jeffery AC CVO MC (Retd)
Governor-General of the Commonwealth of Australia
Spinal Cord Injuries Australia
Membership Application Form
Spinal Cord Injuries Australia (SCIA) has a vision for Australians to embrace people with spinal cord injuries and similar conditions as equals,
giving them the care and support they require to reach their full potential and to actively participate in family and community life.
Members are eligible to vote 6 months after a membership application is approved. Subscriptions become due after June 30 each year.
If a membership application is approved after April 30, the annual subscription fee will not become due until June 30 the following
year.
MR/MRS/MS/MISS/COMPANY: ____________________________________________________________________________
RESIDENTIAL OR BUSINESS ADDRESS (required): _____________________________________________________________
_______________________________________________________________ STATE: __________ POSTCODE: ___________
POSTAL ADDRESS: _____________________________________________________________________________________
PHONE (HOME): (______)_________________ (BUSINESS): (______)_________________ FAX: (______)________________
DATE OF BIRTH: _______/_______/_______ OCCUPATION: ____________________________________________________
DISABILITY & LEVEL (if applicable): __________________________________ ONSET OF DISABILITY (if applicable): ________
EMAIL ADDRESS: ______________________________________________________________________________________
I WOULD LIKE TO RECEIVE ACCORD, THE ORGANISATION’S QUARTERLY MAGAZINE:
YES
NO
SIGNATURE OF APPLICANT: ___________________________________________________ DATE: _______/______/______
NAME OF PROPOSER* (please print): _______________________________________________________________________
SIGNATURE OF PROPOSER: ____________________________________________________ DATE: _______/______/______
NAME OF SECONDER (please print): ________________________________________________________________________
SIGNATURE OF SECONDER: ____________________________________________________ DATE: _______/______/______
*If you are unable to supply a proposer or seconder, who must be current financial members of the organisation, we will arrange this for you.
Free introductory membership status until the next annual subscriptions become due will be granted to people with disabilities,
their family members and carers who have not previously been members of Spinal Cord Injuries Australia.
Ordinary (Pensioner):
$ 5.00
Membership Fee:
$ _________
Payment Enclosed:
Ordinary (Non-Pensioner):
$10.00
Donation:
$ _________
Charge My Credit Card:
Corporate:
$20.00
Total Remitted:
$ _________
Free Introductory Membership:
Method of Payment:
Cheque
Money Order
Mastercard
Visacard
Amex
Bankcard
Diners Club
Cash
Card Number:
Name on Card: ____________________________________________________________
Expiry Date: _____/_____/_____
Signature: _____________________________________________________________________ Date: _____/_____/_____
Registered Office: Level 1, 184 Bourke Road, Alexandria NSW 2015
CFN 12817 - Donations of $2 and over are tax deductible
EK-18/05/04
Back Cover
Freedom Motors Ad
Same ad used in Autumn 2004 edition