Taking conTrol geT moving moTher guilT We Talk

April 2015 | Volume 24 Issue 1
Taking control
One woman’s
battle with MS
Get moving
The latest on
mobility equipment
Mother guilt
Explaining mental
illness to kids
Gill
Hicks
We talk to the
London bomb
survivor ten
years on
right staff?
Ask us how we achieve
success for
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1300 665 880
www.edmen.com.au
inside
Editorial
Editor
Rebecca Somerfield
editor@linkonline.com.au
Graphic designers
Rachel Tortorella
Contact us
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Cover story
Advertising
Advertising managers
Michelle Stevens
E advertising@linkonline.com.au
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M 0419 822 717
10
Ian Smedman
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Subscriptions
Gill Hicks on finding the
strength to #bethebridge,
why people with disability
need respect and being
a mum.
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Mandy Vercoe (08) 8201 3223
subs@linkonline.com.au
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Kelly Vincent’s column
6 News
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14 Meet former Disability
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16 Michelle Vasiliu on mental
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34 37 38 42 43 Keeping it under control with
Jillian Kingsford Smith
Meet a carer with a big heart
Travel with Marayke Jonkers
Music with Anthea Skinner
Woodcutting champ Nick
Fredriksen
44 Dr Sachi Purcal on the NDIS
46 Books
50 Peter Coulter
51 Breakthroughs
52 Social Scene
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2015 — Vol 24/1
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linkmagazine 01
Link: From the editor
From the editor
‘One unknown, estimated female’ is how
emergency service workers labelled London
bomb survivor Gill Hicks when she was being
rescued from a train carriage in King’s Cross
Station. The actions of those people, who
risked their lives to save others, left an indelible
mark on Gill and led her to dedicate her ‘life 2’
to the promotion of peace and tolerance. Her
story (page ten) is also a reminder of how life
can change in an instant, as does our interview
with writer Jillian Kingsford Smith on page 30.
Diagnosed with Multiple Sclerosis in 2012 and
now an author of two books on dealing with
MS, Jillian’s story reminds us that our health
should be our number one priority.
Also in this edition, music writer Anthea
Skinner introduces us to a girl group with a
difference, while guest contributor Michelle
Vasiliu discusses the parental guilt she
experienced after being hospitalised for mental
illness. We also take a look at the latest in
mobility equipment, including a remarkable
wheelchair that can climb a step, and check
out the accessible travel scene in Brisbane.
Happy reading.
Rebecca
Link editor
Contributors
Marayke Jonkers (River city
shines, p38) is a travel journalist,
Paralympic medal-winning
swimmer, motivational speaker
and founder of Sporting Dreams –
a grant program. She’s passionate
about encouraging people with
disability to explore new places
and experience the personal
growth and self-confidence that
travel brings. When she’s not
jet-setting the globe, Marayke
can be found at home on the
Sunshine Coast walking her
assistance dog Lacey.
02 linkonline.com.au
Carole Lander (It’s up to us, p14) is
a freelance writer and editor. While
interviewing subjects for her book
Little People Big Lives, which profiles
short-statured people, she became
interested in the topic of disability. Now
she writes on the subject for a variety
of publications and is pitching her three
children's books, which celebrate living
with a physical difference, to publishers.
April 2015 — Vol 24/1
LINK Lo es...
Coffee club
Sydneysiders looking for a coffee fix or sweet treat should
head for Mr Espresso by Windgap at Matraville.
Run by New South Wales disability support provider Windgap,
in partnership with private firm Mr Espresso, the café is
operated by Windgap Foundation Transition to Work clients
who have been professionally trained in barista skills at their
DSK hospitality and learning centre.
Community liaison manager Zeynep Yapar said staff members
were fully qualified baristas, and had been trained in food
handling and health and safety.
"One customer told us receiving a coffee from our baristas was
the most fabulous part of their day,” said Zeynep. “Other regular
customers tell us how much they enjoy the coffee - they get to
interact with the baristas and establish personal connections.”
Windgap chief executive Serhat Oguz said the initiative was
in line with their transition to work strategy.
Employers – if you are looking for good, reliable staff…
Jobseekers – if you have a disability and are looking for work…
Contact our friendly staff at Community Bridging Services (CBS) Inc.
We offer a free service and have a range of incentives available to
help you meet your staffing needs or reach your employment goals.
"This exciting new partnership with Mr Espresso means we
now have a permanent social enterprise to ensure the full
development of our team members is achieved,'' he said.
The café is open 7am-3pm on weekdays and 6am-12pm on
Saturdays. It’s located at 522 Bunnerong Road, Matraville.
www.windgap.org.au
Share your views and read about all things disabilityrelated at facebook.com/linkdisabilitymagazine.
April 2015 — Vol 24/1
linkmagazine 03
Letters to Link
Letter of the issue:
Meeting the Challenge
By Astariah
By the age of four, my son had
endured numerous operations,
months in hospital and years in splints
and plasters. He was born with six
congenital anomalies affecting his
large intestine, brain, legs and feet.
Miraculously, his brain anomaly did
not inhibit his cognitive development.
But weak stomach muscles, resulting
from multiple bowel operations and
damaged muscles and nerves in his
left leg, left him disadvantaged in the
world of play.
And at four-year-old kinder, play
IS the world. Whilst other children
were running, skipping, jumping and
tumbling over each other, my son
was eager to participate but sadly
restricted. At playgroup and kinder it
was essential he was monitored at all
times; a hard push or nasty fall were
potentially life threatening and had
resulted in hospital admissions.
During the kinder year, another mum
approached me, about my son’s
enthusiasm for sporting activities. She
worked part-time as a personal trainer
and thought that he might benefit from
a training program. Soon after I looked
up the Yellow Pages and sent an email
to my first choice trainer. Adam was
perfect. He was smart, sensitive,
university educated, experienced
and had a strong interest in physical
rehabilitation. Understanding that my son’s
love of sport was excellent motivation, he
modified an exercise program, based on
cross-training principles, for my son’s
current level of fitness.
After the first session, we took home a
simple program to practice. A month
later we returned to have his progress
checked and his program revised. Adam
was enthusiastic about his improvements
and adapted the program accordingly.
We practiced at home for another four
weeks. As Teal’s primary goal was to run,
Adam had focused on providing him with
core and leg strengthening exercises.
Nine weeks and three sessions later my
son could sit up from lying prone for the
first time in his life.
Well satisfied with the results we had a
break from training sessions; keeping
up with Milo Cricket, Auskick Footy and
exercise in the backyard or playground.
In August the following year (nine months
after our first session) we returned to
Adam for weekly training sessions for
three months. As my son had been so
dependent on his father and I to give him
support with his special needs, Adam
addressed the need for my son to trust
in him as his Primary Support Person,
during training sessions.
The improvement in his confidence, coordination and strength was so worth
the cost of travelling and attending the
Send your letter to the editor:
Link Editor, Inprint Design, 1B Laffer Drive, Bedford Park SA 5042
or email it to editor@linkonline.com.au
Please include your postal address (not for publication). Letters should be a
maximum of 200 words and may be edited for brevity and clarity.
The best letter wins $50
04 linkonline.com.au
Teal's collage shows a positive self-image.
sessions. By the end of three months he
was doing single leg squats upon his left
leg, in spite of the severe muscle and
nerve damage, suffered in the womb.
Last year my son (now grade 4)
competed in the inter-school crosscountry running challenge and
participated in multi-sports, little
league soccer and swimming lessons.
The short-term investment in sports
training has paid long-term dividends.
Last year, my son was asked to collage
his perception of himself. It shows
that positive self-image and a healthy
body image can be developed within
children, even those challenged by
physical disabilities. With acceptance
from their family, friends and peers
and participation in activities that
encourage their imagination and
development in positive ways, these
children can thrive.
By contributing a letter you authorise Link to publish it in the magazine
or www.linkonline.com.au. Letters may be edited for length and clarity.
All published contributions earn the author a free copy of the magazine,
containing the letter (or current subscribers may specify that they would prefer
their free magazine as an extension of their current subscription), provided a
postal address is included with the original letter. Your name, suburb and state
will be published with your letter unless you specify otherwise.
April 2015 — Vol 24/1
Link: Opinion
Inclusion essential in
emergency management
it comes to emergency management.
When planning communication with
the community during events such
as fires, it is essential to consider the
needs of everyone. While most people
in my generation are confident using
and checking in on a variety of social
media, the elderly may not plug in as
regularly as our screen-savvy youth.
Radio and television broadcasts may be
more effective communication methods.
Communication systems
that cater to everyone in our
community are vital during
times of crisis, writes Dignity
for Disability MLC Kelly Vincent.
Following the recent bushfires in the
Adelaide Hills, I held a public meeting to
talk about how emergency services and
information about emergency situations
could be made more accessible for Deaf
and disabled people. The discussion has
been ongoing and broad ranging.
People with disabilities and elderly people
can be particularly disadvantaged when
April 2015 — Vol 24/1
If you have a physical disability, it’s
important that emergency services
know that you may need assistance to
leave your home. People may also have
equipment, medications or assistance
animals they must take with them once
they evacuate.
I’ve also heard that people with
intellectual disability may require
extra assistance understanding the
significance of emergency situations,
and early warning and explanation
about possible scenarios. The use of
the Easy or plain English and visual
communication methods may be
needed. If needs are pre-recorded and
passed onto emergency services, the
safest options and supports can be
considered, well ahead of time. Waiting
until the emergency is upon is too late to
start considering what scenarios might
emerge – everyone needs to be prepared
– whether you’re young, old, have a
disability or not.
Equally, the Deaf and hard of hearing
people need high quality captions and
Auslan (Australian Sign Language)
interpretation in all emergency TV
broadcasts. As it doesn’t always
happen at present, I am going to move
amendments to the (South Australian)
Emergency Management Act to ensure
that experienced Auslan interpreters
are included. It must be included in
planning for these events so that when
transmissions are organised, it’s not
only emergency services personnel
and government ministers who are
on standby. It’s also essential that
Auslan interpreters are upskilled so
they have a genuine understanding
of the terminology used in emergency
services too – so there is nothing lost
in translation.
At the end of the day it’s about designing
systems, programs and communications
during emergencies that include
everyone in our community. I am grateful
to everyone who has contributed to
this project so far and welcome ideas
and feedback. Let’s work together to
ensure that everyone enjoys the right
to safety.
linkmagazine 05
Link: News
Abuse inquiry underway
Following substantial lobbying by
disability advocacy groups, the Federal
Government announced a national
Senate inquiry into disability abuse
in February. Submissions are being
accepted until April 10, with a report
into the issue due on June 24, 2015.
According to the terms of reference, the
inquiry will examine “violence, abuse and
neglect against people with disability
in institutional and residential settings,
including the gender and age related
dimensions, and the particular situation
of Aboriginal and Torres Strait Islander
people with disability, and culturally
and linguistically diverse people with
disability”.
Speaking after the inquiry was
announced, Assistant Minister for
Social Services, Senator Mitch Fifield,
said the Committee’s report would be a
valuable input into the establishment of
a new national quality and safeguards
framework for the NDIS.
“Some people with disability are more
vulnerable to abuse, so we need a strong
system to keep them safe,” Senator
Fifield said.
Shadow Minister for Disability Reform
Jenny Macklin said a Senate inquiry was
an important step in the pathway to
healing for people with disability who
have suffered abuse.
“We must also ensure that proper
safeguards are in place to ensure that
people with disability - wherever they
may reside – are safe and supported
and free from fear,” Ms Macklin said.
Australian Greens spokesperson on
disabilities, Senator Rachel Siewert,
who moved the motion to conduct the
inquiry, said it was “an important step
towards shining a light on an issue that
has gone unacknowledged for too long”.
Kelly Vincent MLC, from South
Australia’s Dignity for Disability party,
also welcomed the inquiry, commenting:
“It's essential that failings of the system
are righted, and any abusive perpetrators
are removed, particularly as we move
to nationwide roll-out of the National
Disability Insurance Scheme."
For more information on the inquiry go
to www.aph.gov.au/Parliamentary_
Business/Committees/Senate/
Community_Affairs/Violence_abuse_
neglect.
International autism conference for Queensland
World-acclaimed autism researchers
will meet in Brisbane from September
9 to 11, 2015, for the fourth Asia Pacific
Autism Conference (APAC15) to explore
the approaching revolution in how autism
is understood.
The conference program is designed for
researchers, practitioners, teachers and
educators, allied health professionals,
support organisations, advocates,
parents, families and carers, and policy
makers.
Jointly hosted by Autism Queensland and
the Australian Advisory Board on Autism
Spectrum Disorders, APAC15’s theme
of ‘Transforming Futures’ will present
the latest research and evidence-based
practices for autism services, treatments,
interventions and education.
Keynote speakers confirmed to date include
UK developmental cognitive scientist Dr Liz
Pellicano, US child/adolescent psychiatrist
Dr Joseph Piven, Belgian autism lecturer,
consultant and author Dr Peter Vermeulen,
clinical psychologist Dr Iliana Magiati from
Singapore, Social Thinking creator Michelle
Garcia Winner from the US, and academic
and parent Dr Yuan Gao from China.
APAC15 Committee Chair Penny Beeston
said Australian research will be a major
focus for the conference.
www.apac15.org.au
Videos promote understanding of complex issues
A series of video clips to help people
better understand advocacy and
legal services available in relation to
guardianship have been released by
Carers Queensland, in conjunction with
state government authorities.
06 linkonline.com.au
Chief executive of Carers Queensland
Ms Debra Cottrell said the short, easyto-understand videos, which feature
animated characters, describe several
complex legal guardianship issues which
are sometimes confusing.
“It was important for us to make
guardianship issues as uncomplicated
as possible and help people maximise
their experience with legal and advocate
services,” Ms Cottrell said.
The videos are available on YouTube or
visit www.carersqld.asn.au
April 2015 — Vol 24/1
Swimming success for Aliesha
Swimmer Aliesha Sneesby racked up
a staggering nine medals at the 7th
Down Syndrome World Swimming
Championships held in Mexico last
November. The 18-year-old from
Queensland now has her sights set on
Italy 2016, as well as a number of local
competitions.
“Our goal is to keep her in the pool and
in the World Championships,” Aleisha’s
mum, Carol, said.
Carol sat on the sidelines in Mexico
as her daughter stood on the podium
while the Australian National anthem
was sung.
“It was mind blowing – I was so proud
because they were singing it for my
daughter. She came first against the
entire world,” she said.
Aliesha was supported by Horizon
Foundation’s Axiom ‘Your Life Your
Choice’ service, a self-directed funding
program that enables people with
disability and their family to have control
over their support and services.
Horizon Foundation manager Kylee
Honeyman said she “felt honoured to be a
part of Aliesha’s journey and proud of her
exceptional athletic accomplishments”.
Carol said the funding supported Aliesha
to both prepare for and go to the Games.
“Axiom YLYC helped me gain the funding
and told me how I could use (the money)
in ways for Aliesha to become part of
her community,” she said.
“Aliesha trained 2.5-hours a day, six
days a week in the swimming pool and
undertook two personal training sessions
at the gym each week. I also used the
money for domestic support and respite
in order to provide care for Aliesha’s
physical development journey.”
Aliesha (centre) with mum Carol and Horizon
Foundation manager Kylee Honeyman.
Carol has self-managed her funding for
more than a year and said it empowered
her family. “I have found it very easy to
use,” she said.
She advised others in Queensland
to embrace self-managed funding in
preparation of the NDIS, set to be rolled
out in the sunshine state in 2016.
Novita opens new kids’ therapy centre
Adelaide-based Novita Children’s
Services has opened a Children’s Therapy
Centre in direct response to a 150 per
cent increase in demand for its paediatric
allied health services over the past year.
Novita chief executive Glenn Rappensberg
said the extraordinary growth in demand
was in part due to the introduction of the
National Disability Insurance Scheme (NDIS).
“Under the NDIS, we are now able to
assist children with all developmental
disabilities, including developmental delay,
Down Syndrome and Autism Spectrum
Disorder. This is in addition to the children
with a physical disability or an acquired
brain injury that we have traditionally
supported,” said Mr Rappensberg.
The Children’s Therapy Centre will offer
five individual consulting suites, two
multi-purpose group therapy rooms, an
expanded waiting area and a gait and
mobility assessment facility.
April 2015 — Vol 24/1
Novita client Xavier pictured with mum Monika and therapist Emily, with Governor of SA,
Hieu Van Le AO.
“We can now conduct 50 individual
consultations per day, and as many as
20 group consultations per day,” said
Mr Rappensberg.
“Research tells us that allied health
intervention for children maximises the
opportunities for them to discover their
abilities and reach their full potential.”
The facility was opened by the Governor
of South Australia and Novita Patron, His
Excellency the Honourable Hieu Van Le
AO, who also interred a time capsule to
commemorate Novita’s 75th anniversary.
linkmagazine 07
Link: Products
Products & Services
Satisfaction guaranteed
Stability meets style
The Cobra Libre 2 is
an auto-masturbating
device from In the
Mood that’s easy for
men to use on their
own. It’s easier than
manual sleeves to
hold in position as it
stimulates the most
sensitive parts of the
penis without the need for ‘up and down’ movements. The
Cobra has simple on/off controls, 11 vibration patterns, is
fully rechargeable and 100% waterproof. As with all bodysafe, silicone aids, the user must remember to use a waterbased lubricant. In the Mood specialises in easy-to-use adult
lifestyle accessories for men and women, and guarantee
discreet shipping. They’re also offering Link readers 15%
off products ordered online between now and June 30,
2015. Simply type ‘LINK’ as the coupon code at the
check-out. www.inthemood.com.au
The new Action 4NG
wheelchair by Invacare is a
stylish, foldable chair that
is packed with features.
Several versions are available
including the Standard (selfpropelling) and Heavy Duty
models, upgraded to a user
weight of 160 kilograms.
There’s also a Transit version
(with attendant), a ‘Hemi’,
‘OAD’ (one-arm drive) and a DHR (double hand-rim) model.
And due to platform-sharing with the Action 2NG and Action
3NG, the functional needs of users and carers are easily
covered for optimal everyday use. The new range also has
a priority on safety, such as increased stability on the Action
4NG complete with double crossbar and a rear frame design
giving the extra stability of backrest canes. www.invacare.
com.au/Actionfamily
Ring, ring
The Telecommunications Universal Service Management
Agency (TUSMA) and the National Relay Service (NRS) have
launched a free app to help people who have a hearing or
speech impairment to make phone calls. The app provides
users with access to a number of NRS call options, including
internet relay, Speak and Listen, captioned relay and video
relay. Both internet relay and Speak and Listen include
additional features that are only available through the app,
such as creating customised phrases for regular use and
utilising the device’s GPS in providing location information.
Deb Fullwood, from NRS Outreach, said the app was an
important development. “People who have a hearing or
speech impairment are now just as mobile in communicating
and making phone calls
as everyone else – all
they need is their smart
phone,” she said.
The world-first app
is available on iTunes
and Google Play. www.
relayservice.gov.au
08 linkonline.com.au
Easy does it
Ezy-Ups is designed to assist anyone with
mobility and flexibility issues. Australian
inventor Bill Carbray came up with the
idea when he noticed that his 93-yearold mother had issues dressing and
undressing. Bill saw that it was having a
negative effect on his mother’s enjoyment
of life, and that she was becoming
hesitant to socialise or do activities
away from home. Ezy-Ups allow users
to undress and dress themselves without
assistance, providing increased privacy,
independence and dignity. It consists of
two lightweight arm extensions which
have strategically placed Velcro pads
to grip clothing and incontinence pads.
It can be used with elastic-waisted
underpants (disposable and standard),
skirts, tracksuits and trousers. www.ezyups.com
April 2015 — Vol 24/1
April 2015 — Vol 24/1
linkmagazine 09
Link: Interview
It’s nearly ten years since Gill
Hicks’ life changed forever. The
London-based design curator
was on a train at King's Cross
Station on July 7, 2005, when
four suicide bombers detonated
their devices in locations across
the city. Gill was one of 700
people injured in the attacks,
which tragically took the lives
of 52 people. She lost both her
legs from below the knee and
suffered severe and permanent
injuries - but, against the odds,
she survived.
10 linkonline.com.au
April 2015 — Vol 24/1
JUST ONE
Person
Now based in her home town of
Adelaide, Gill is a passionate advocate
for peace and founder of MadforPeace
- a not-for-profit organisation that
works to connect people globally and
end violent extremism. Named South
Australian of the Year in 2014 and the
recipient of an MBE for her charity work,
she recently launched a new initiative,
#BeTheBridge, which aims to eradicate
ignorance and intolerance. In 2015 she’s
planning a series of amazing physical
challenges - everything from cage diving
with sharks to abseiling a building - to
commemorate the tenth anniversary
of the London bombings and to show
violent extremists that confidence is
more powerful than fear. Link talked
to Gill about encouraging tolerance,
managing her disability and being a
mum.
Over the past few months we’ve seen
several unfortunate incidents linked to
extremism. How do you feel when you
see tragedies like these play out and
how do we prevent them leading to
a more divisive society?
Every time there is an act of terrorism,
be it a suicide bomber in Pakistan or a
lone gunman in Australia, I still feel the
same amount of sickness and pain. It’s
ten years (this year) since the bombing
incident in London where I was fortunate
to survive – I guess after a decade I was
expecting the susceptibility to destructive
April 2015 — Vol 24/1
ideologies would have diminished – but
it is quite the opposite! There are a lot
of people doing so much to eradicate
violent extremism from our global lives,
so I have to remain optimistic that we will
all know a sense of true peace one day.
To my rescuers it didn’t
matter who I was - the
colour of my skin, if I had a
faith or no faith - nothing
mattered other than I was a
precious human life.
Tell us about the #BeTheBridge
project.
This is an initiative built on the belief
that just one person can make a
significant difference. Often all it takes
for any divide to be bridged is for just
one person to reach out. No matter our
cultural or religious - or non-religious backgrounds, whatever our difference
may be, #BeTheBridge is encouraging
us all to find the strength and confidence
to endeavour to understand more about
‘the other’. Being the Bridge is about
being an advocate for the eradication
of ignorance and intolerance. It is about
promoting the spaces and platforms that
support learning, greater understanding
and, ultimately, unity. Being The Bridge
is about making a choice, a positive
choice to co-create our communities
and societies into environments which
are safe, confident and thriving places.
You recently ran for a seat in the City
of Unley local government election
in South Australia. Are we likely to
see Gill Hicks on the political stage
in the future?
I have joined the Committee for Adelaide
as an alternative to Council – my
ambition is to ensure that I am making a
difference to the lives of the people in my
community. Being a mum of a two-yearold (Amelie) has made me prioritise my
time differently, so any political ideas will
have to go into the ‘whatever may be in
the future, will be’ pot. All that matters to
me is that I find the right vessels in which
to make the greatest positive difference.
What’s the idea behind your #Power10?
I wanted to commemorate the ten years
since the London Bombings in a way
that showed strength, courage and the
triumph of confidence over fear. It is both
a clear message to those who hold a
violent extremist view, that the spirit of
humanity will never be broken, as well as
being a public message – that we human
beings are capable of achieving things
– we just have to believe. I will be doing
a variety of physical challenges from a
bungee jump with a twist to tap dancing!
linkmagazine 11
Link: Interview
Regarding the events of July 2005,
you’ve spoken a lot about the amazing
efforts of the emergency services
personnel and medicos who saved
your life. What influence do these
people have on the way you live your
life now?
Their actions have shaped the core of
everything I am and do in my ‘life 2’. They
risked their lives in coming to save mine
and others, not knowing who we were
– the brilliance of humanity was shown
to me in their actions. I was labeled only
as ‘One unknown, estimated female’. To
my rescuers it didn’t matter who I was,
the colour of my skin, if I had a faith or
no faith at all – nothing mattered other
than I was a precious human life.
Your recounting of the time
immediately after the bomb went off
and your thought process at the time
(as discussed in your ABC Richard
Fidler interview) is fascinating. You
say you chose the ‘angry voice of life’
whilst lying in the train carriage - how
hard was this decision? Was there ever
a time when you regretted it? I have never regretted being alive – it is
the greatest gift I could be given. My only
pressure is that I honour that second
chance as brilliantly and best I can. I
was very intimidated by the anger of the
voice of life – in some ways I was too
scared to disobey it!
You often talk of the seemingly
trivial chain of events that led to you
being in King's Cross Station on that
particular train and carriage at that
time. Are you a believer in fate?
A BIG and complex subject – I guess I
must say that when I met with some of
the bereaved families, especially those
who had small children, any idea I had
of fate completely changed. How can it
ever be that children should lose their
parent in such horrific circumstances?
How did you cope emotionally during
your treatment and rehabilitation?
Rehab still continues – it is a lifelong
commitment – as is learning to adjust,
adapt and accept such monumental
change to my life, not just physically
but also spiritually and mentally. I was
blessed with an amazing team of people
who showed me how to live again, how
to walk, to ‘be’ in the world. I am proud
to say that ten years on, many of these
people are now counted as friends.
What sort of rehabilitation treatment
do you currently undergo and how
do you manage your disability on a
day-to-day basis?
I am at the gym, with an amazing
personal trainer, two days a week. This
amount of physical dedication helps me
in my day-to-day life, particularly being
the mum of a busy toddler. I manage my
disability by managing my expectations
of change. No two days are the same
for me – one day I may be fine to walk
for long periods of time, the next day I
may have too much stump pain and,
therefore, need to ease up on my
physical activity. It’s very hard to plan
long-term events.
What do you think are the main
challenges facing people with
disability in Australia?
The main challenges facing ALL people
with a disability is having respect,
understanding and appropriate help
– both from the government and the
general public. For many disabled
people, like myself, it is a lifelong journey
– not a short-term infliction. Anything
which can make our lives that little
more dignified and easier, the better.
I am a great advocate for Universal
Design, looking at how both people
with disability, the elderly and young can
benefit from ‘joined up’ thinking when
city planning and designing services.
Finally, how is life as a mum? Being a mum is almost indescribable. I
have never understood so wonderfully
what absolute unconditional love is all
about – how in a heartbeat, I would give
my life, my all, for this precious little
person. She motivates me, teaches me,
grounds me and uplifts me. She comes
to everything with me, her first plane trip
was when she was just eight weeks old,
and now she can’t wait to go ‘up, up’.
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inspiring achievement
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and Community Inclusion courses
teach you how to facilitate,
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with disabilities and their families.
We offer a Bachelor of Disability
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• Pathways for people with Cert IV and Diplomas
• What RPL may be available for previous study
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linkmagazine 13
Link: Issues
It’s up to us
Former Disability Discrimination
Commissioner Graeme Innes wants us
to challenge discrimination, discovers
Carole Lander.
Last year the disability sector was
dealt a blow when the Commonwealth
Government disbanded the position of
Disability Discrimination Commissioner.
Graeme Innes held this position
from 2005 to 2014, and prior to that
was Human Rights Commissioner
(2005–2009) and Race Discrimination
Commissioner (2009–2011).
Since losing his post, Innes has established
himself as a private advocate for human
rights for people with disability. His blog
– Howzat (www.graemeinnes.com) –
bristles with anecdotes, speeches and
encouragements to keep discrimination
issues in the public eye. Graeme’s sense
of humour also shines through, and he
reveals a lot of himself in the blog posts.
Graeme is also chair of the Attitudes
Foundation (www.attitude.org.au) –
established to tell stories about Australians
with disability using video. Attitude
partnered with Attitude Pictures Australia
to develop a documentary series that has
screened on ABC television.
However, he regrets the ABC’s closing
of the RampUp portal, which was edited
by Stella Young who sadly passed away
last December.
“It was a disappointing reduction in
support,” says Innes, who spoke at
Stella’s public memorial service. “The
Commonwealth Government provided
seed funding for this initiative for three
years on the basis that the ABC would
take it over. They didn’t and they say it
is because of significant budget cuts.
There is some truth in that but others
would say that the ABC should have
maintained that portal.”
Graeme has also been a vocal advocate
for an inquiry into the abuse of people
with disability, announced by the Federal
14 linkonline.com.au
Government in February this year.
“The events outlined in the Four Corners
program are just the tip of the iceberg, as
complaints under the new NSW disability
legislation demonstrate,” he says. “When
the NDIS fully rolls out this will be a
national issue, and should be dealt with
on the national stage.”
On the positive side, Innes is confident
that the National Disability Insurance
Scheme is rolling out successfully.
“There have been criticisms; as there
always are with significant change,” he
says. “The more conservative service
organisations are raising issues because
they are not keen to move to a new
way of delivering services. The media
tend to write only negative stories. But
the positive news is that it is operating
under budget and hugely popular with
recipients. A survey of people receiving
support shows that 99% of them are
happy with the process. For a young
scheme that is a very positive result.”
Born with vision impairment, Graeme
has been campaigning for people with
disability since he was three. He started
by fundraising for what was then the
Royal Blind Society (now Vision Australia)
and spun the chocolate wheel with Sir
Robert Helpmann at a fundraiser for the
Victor Maxwell Kindergarten.
At 14, Innes realised that the best way to
change the law and help disadvantaged
people was to become a lawyer himself.
After leaving school in the late 1970s, he
went to Sydney University Law School,
which was housed in one building
making it easy for him to find his way
around. His text books were recorded
on reel-to-reel tape by volunteers at the
Royal Brail Society and in lectures he
would whisper into his recorder, later
transcribing the notes at home.
When he graduated (not spectacularly but
well enough considering the challenges
he had to overcome) Innes had 30 job
interviews and 30 rejections in the first
I encourage all of
you, artistically or
legally, to challenge the
discrimination that
you experience.
year. He decided to take the New South
Wales public service examination and
was offered a job as a clerical assistant,
later getting a break when the Consumer
Affairs Department took him on as a
lawyer. “The discrimination I faced in that
12 months looking for a job probably
fired my zeal for advocacy,” he says.
Graeme has a clear message for people
living with disability: “(Attorney-General)
Senator Brandis’s actions – taking away
our Commissioner – have meant that
our destiny is firmly in our hands. So I
encourage all of you, artistically or legally,
to challenge the discrimination that you
experience. Don’t think that one individual
action can’t make a difference – because
the reality is that it is only the action of
individuals that does make a difference.
Your challenge to discrimination will affirm
your view of the damage that it did to you,
and make a better and more inclusive
society for us all.”
April 2015 — Vol 24/1
Link: Advertorial
Flinders Uni disability
courses commended
A five-year review of disability courses
at Flinders University has seen both their
high standard of academic programs
and commitment to social, global and
student-centred learning commended.
The university, located south of Adelaide,
offers several degrees unique in Australia,
including a Bachelor of Disability and
Developmental Education (also available
as an Honours program), a Graduate
Certificate in Disability Studies and
Master of Disability Studies.
“The content, teaching innovation,
and commitment demonstrated in the
delivery of the programs was praised
by The Review Committee,” she said.
“The Committee reported that courses
were of high quality, socially responsible,
student-focused and globally connected.
The programs’ successful engagement
with industry partners and stakeholders,
through practicum placements in
undergraduate and postgraduate
courses, was also acknowledged.”
The Bachelor of Disability and
Meredith Brunker, from the university’s
Disability and Community Inclusion Unit
Developmental Education (BDDE) is a
in the School of Health Sciences, said
four-year equivalent course offered on
enrolments had increased steadily over
a full or part-time basis.
the past five years, demonstrating the
“The course can be delivered on-campus
strength of the innovative curriculum
20150306 Link Disability Magazine OL.pdf 1 5/03/2015or
4:41:59
PM
online,
with options in fourth year of
design and delivery.
a major in Rehabilitation Counselling or
an honours year focusing on research,”
Ms Brunker said.
“Graduates are qualified as
Developmental Educators, with four
work integrated learning placements
throughout the course, and are eligible
for full membership of Developmental
Educators Australia Inc (DEAI).”
Also on offer is the Graduate Certificate
in Disability Studies (GCDS), a six-month
full-time equivalent course which may
provide entry into the Master of Disability
Policy and Practice.
For more information, including entry
requirements for the Masters program,
visit www.flinders.edu.au/sohs/sites/
disability-studies/
C
M
Y
CM
MY
CY
CMY
K
April 2015 — Vol 24/1
linkmagazine 15
Link: Issues
Guilty Respite
Children’s author Michelle
Vasiliu, who has bipolar affective
disorder, explores the parental
guilt she experienced after
being hospitalised four times
in the past year.
I’m sitting alone in a psychiatric hospital
room. It’s a bit like an apartment suite
really. The décor is attractive. Modern
and stylish. No dirty finger prints
smearing the pristine walls. No stains
on what looks like a recently refurbished
carpet job. The ensuite is just the way I
like it - neat and tidy. Hubbie’s electric
toothbrush and shaver are nowhere to
be seen. Calming music hums in the
background. It’s peaceful and it’s serene.
There’s nothing too taxing they expect
from my voluntary admission here. I’ve
been assured my children are in good
hands so there’s nothing to do but
concentrate on getting well.
16 linkonline.com.au
If only it were that simple. No-one
warned me about the guilt. The guilt
that consumes me when I rationalise why
I chose to come here in the first place.
In theory, the odds of getting better
whilst in hospital as opposed to staying
at home are in my favour. All my meals
are cooked for me. Three meals per day
in fact, as well as morning tea at 10am
and sandwiches at 7.30pm for supper.
For someone who loathes cooking, this
in itself is a major plus. Besides doing my
own laundry and keeping my room tidy,
there’s not a skerrick of housework to do.
There’s a lot of support, and it’s
comforting to know it’s there. Every
patient has a dedicated nurse for each
morning, afternoon and night shift. On
average, a psychiatrist will see you
three to four times per week. Group
therapy, including diversional art therapy
and traditional ‘talk’ therapy are the
norm, and upon request, a dedicated
psychologist can be arranged on a
weekly basis.
There’s also a community out-worker
who can advocate on behalf of those
who need it, as well as a team of pastoral
workers for those seeking spiritual
guidance.
All-in-all, it’s a pretty good place to be
for those who need it. For someone like
me. Someone like me, who suffers from
clinical depression, and from time to
time could greatly benefit from respite.
It’s not all fun and good times though.
Bags are checked upon admission.
Drugs and alcohol are banned totally,
and objects like scissors and razors are
removed in case ideas of self-harm rear
their ugly head. Medication is handed
out by the nurses at scheduled times
throughout the day. Walks and outings are
April 2015 — Vol 24/1
strictly monitored. Attendance at groups
is expected, and participation in sessions
like mindfulness, relaxation, tai chai and
so forth is highly encouraged. Simply
sitting around is not considered conducive
to one’s recovery, and rightly so.
Before I came here, I waged up the
pros and cons, and the pros came out
in front. If I’m going to fully benefit
from this opportunity that has been
offered to me, however, I have to let
go of the guilt. Mother’s guilt. The guilt
that overwhelms me at times when I
think about what I’ve done of my own
choosing. Knowing I’ve left my 10 and
13-year-old daughter and son at home,
without their mother, while she takes
time out to ‘recover’. Their mother, who’s
not at home making their school lunches,
No-one warned me
about the guilt. The
guilt that consumes me
when I rationalise why
I chose to come here in
the first place.
cooking their evening meal, doing the
school run or dropping them off at their
extra-curricular activities. The mother
who’s not supervising their homework
and making sure they’re ready for the
next day. The mother who isn’t there to
share in that last goodnight snuggle,
and kiss them good-night.
I’ve been told my children are doing fine.
Some of their teachers and family friends
have even commented that they’ve
demonstrated greater maturity as a result
of having to take on more responsibility
since I came into hospital. These are the
things I try to tell myself when the guilt
threatens to take over. That, and the fact,
that if I go totally under, then I am no
good to anyone, least of all my children
and husband. That is why I choose to
come into hospital for respite when I
know my depression is proving just that
little bit too much.
Michelle Vasiliu is a Victorian-based
writer and the author of My Happy Sad
Mummy. (Check out our Books page for
details.) www.michellevasiliu.com
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April 2015 — Vol 24/1
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linkmagazine 17
FEATURE:
Mobility Equipment
Walk on
A new robotic walking system is
helping people with Spinal Cord
Injuries in Queensland improve
their mobility.
Rewalk Robotics has received
Therapeutic Goods Administration (TGA)
approval in Australia for its exoskeleton
mobility device.
The American company will distribute
the Rewalk system through Gold Coastbased Making Strides, the first dedicated
spinal cord recovery centre in Australia.
Making Strides director Kristee Shepherd
said they were excited to be making the
technology available to Australians.
“Rewalk has the potential to reshape
our vision of what life after a spinal cord
injury looks like,” Ms Shepherd said.
“It’s designed for people with paraplegia
however we have a C-level client who
has been able to use the ReWalk with
the aid of some active hands gloves.
The primary recommendation for using
ReWalk would be good trunk control.”
Rewalk is a wearable robotic exoskeleton
that provides powered hip and knee
motion to enable individuals with Spinal
Cord Injury (SCI) to stand upright and
walk. It provides user-initiated mobility
through the integration of a wearable
brace support, a
computer-based
control system and
motion sensors.
The system allows
independent,
controlled walking
while mimicking
the natural gait
patterns of the
legs. The TGA has approved the device
for both rehabilitation and personal use.
Making Strides is currently conducting
rehabilitation training of the system with
several clients.
“It has been a wonderful experience
to incorporate the Rewalk system into
our program,” says Making Strides
director of training Genny Kroll-Rosen.
“It provides a form of exercise that may
be particularly benefits for our clients
in helping them reach their functional
recovery-focused goals.”
Jake Nunn, who became a T4 incomplete
paraplegic after his motorbike collided
with an obscured tree stump, crushing
bits of his T5, T6 and T7, is currently using
the Rewalk as part of his rehabilitation.
“After using the Rewalk for a week it
gave me a surreal feeling of standing tall
and walking again,” Jake said. “Not only
did I feel it was physically beneficial, but
it was also mentally beneficial.”
For fellow user Greg Lawry the Rewalk
has the potential to get him back to work
as a mechanic.
“Before using it I expected it to be
quite hard but, once in it I found it more
confusing rather than difficult,” Gary
said. “Once I realised I had to trust the
machine, it became a lot easier.
“For now, I plan on getting as independent
in the Rewalk as possible, but the
ultimate goal would be to use it as a daily
source of mobility. My short-term goals
are to achieve all the health benefits of
being upright and mobile. Once I can
move in the Rewalk independently, and
can afford one for personal use, I see
it as being invaluable in a workshop
environment as I would be able to walk
around vehicles, look into the bonnet
to see the engine and walk under the
hoist to examine underneath cars.”
L–R: Greg Lawry hopes the Rewalk will enable him to return to work.
Jake Nunn says using the Rewalk is mentally beneficial.
18 linkonline.com.au
April 2015 — Vol 24/1
Take a seat
Perseverance is the key when
it comes to choosing mobility
equipment for children, says
mother-of-two, Simone, from
Collie in WA’s south-west.
“My advice to other parents is to look
into all types of mobility equipment,”
she says. “Trial as many as you can until
you find one that is suited to your child,
because there will be one but you may
have to look for a while. Keep persevering
and you will find the perfect one.”
Simone’s two-year-old daughter,
Brooklyn, has ‘Agenesis of the Corpus
Callosum’ – a condition that means
the nerves that join the right and left
hemispheres of the brain did not develop,
so the right and left parts of the brain
cannot communicate with each other.
with mobility issues, Simone says
the X:Panda has “improved our lives
incredibly”.
“Since getting the X:Panda Brooklyn’s
muscles have become stronger, she can
sit at the table and be at the same height
as everyone else, and she has started
eating solids as it’s so easy for her to sit
and eat because she is well-supported.
She has improved so much in the time
we have had the X:Panda.”
“We chose the X:Panda because
for Brooklyn’s small size and her low
muscle tone – it looked to have the best
and most supports where she needed
them. This system also had the most
interchangeable supports and it grows as
your child grows which is the best part.”
“Due to this condition Brooklyn’s
development has been affected in nearly
every aspect,” says Simone. “She has
very low muscle tone, epilepsy, vision
impairment, cerebral palsy, microcephaly,
and global development delay.”
In addition to the X:Panda, Simone says
Brooklyn, a happy and bubbly toddler
who loves spending time with big sister
Ebony and being outdoors with the wind
in her hair, spends 30 minutes each
day in a standing frame which helps to
strengthen her muscles and hip bones.
Simone recently invested in an X:Panda
paediatric seating system from AC
Mobility. Designed especially for children
“We also have a ‘Showerbuddy
Tubdipper’ to assist her in the bath which
is amazing,” she said. “I struggled with
Brooklyn in her new X:Panda seating system.
bathing before we got it. At night time
she is in a ‘Symmetrisleep’ because
she has a bit of a curve in her spine so
we are trying to correct that while she
is little. She also has a Squiggles Early
Activity System which is a velcro mat
with different interchangeable positioning
supports.”
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April 2015 — Vol 24/1
linkmagazine 19
FEATURE:
Mobility Equipment
Mobility scooter Stay
lowdown
safe
So you’re in the market for a
mobility scooter? But where do
you start? And what should you
know before taking the plunge?
Link asked Bluesky Mobility
expert Damian Ryan to give us
his top tips.
Once you’ve joined the ranks
of mobility scooter or electric
wheelchair drivers it’s important
to drive safely.
“Under Australian road rules, a mobility
scooter is treated as a pedestrian — as
long as it cannot travel faster than ten
kilometres per hour and is used by a
person who has difficulty walking or is
unable to walk,” advises Damian Ryan
from Bluesky Mobility.
Consider your needs – when it comes
to which sort of scooter is best for you,
consider where and when you want to
use it and the distances you plan to travel.
Shoppers’ choice – if you plan to use
your scooter primarily in the home and
shopping centres, then size, turning
circle and manoeuvrability will be top
priorities. A compact four-wheel model
might be the best choice.
Hit the road – for outdoor travel,
including varied terrain such as uneven
footpaths, gravel, grassed areas and
hills, then a larger four-wheel model
will provide more power. You will also
want your scooter to have suspension
to safely cope with uneven terrain and
provide a more comfortable ride.
Medical factors – to safely drive a
mobility scooter you’ll need good hearing
and eyesight (glasses are fine), strength,
coordination, balance and concentration.
If you regularly take medicine that makes
you drowsy, a scooter may not be a
safe choice. Have a check-up with your
doctor or occupational therapist before
buying a scooter, and have regular
follow-up visits.
Watch your speed – stick to a maximum
speed of ten kilometres per hour on
footpaths, shared paths and roads.
However, if you need to navigate steep
hills or travel longer distances, then you’ll
need a machine with a more powerful
motor and larger battery capacity. Make
sure you ask how many kilometres you
will get out of each battery charge and
how long it will take to charge.
20 linkonline.com.au
Night owl – if you plan to be out on your
scooter any time after the street lights
go on, then the scooter must have front
and rear lights and indicators.
Load capacity – what kind of weight (ie;
your’s!) will the scooter need to carry? If
you are a larger person, you will need a
more robust, heavy-duty model.
Licensing, registration and insurance –
you don’t need a license to drive a
scooter or electric wheelchair in some
states, but check with your state road
authority for all the rules and regulations,
including registration and insurance
requirements.
Get the right advice – buying a mobility
device is a big step so make sure you
talk to a reputable company, who
will assess your needs and help you
decide which product is right for you.
Look also for a company that provides
complimentary training around your
home and neighbourhood at time of
delivery. Some local councils also
provide scooter training or have a local
scooter club!
“As a pedestrian, you should ideally
drive your scooter on footpaths, shared
paths, in parks and shopping centres,
and should cross roads at pedestrian
crossings. Only use your scooter on the
road as a last resort. You should also use
lower speeds in crowded areas and to
suit rough terrain. Also, when travelling
on footpaths, don't drive faster than the
pedestrians around you."
Damian says scooter drivers need to
watch for parked cars, for cars reversing
and for drivers opening their doors.
“Never assume that a driver has seen
you,” he says. “Use a bicycle flag, lights
and reflectors and wear bright clothes
to make you more visible. And your
scooter must have front and rear lights
and indicators if you plan to use it at
night.”
Driving your scooter after drinking
alcohol is a no-no, as is overloading
your machine with too much shopping.
“Too much weight can make you more
likely to tip over and large parcels may
block your view.”
April 2015 — Vol 24/1
April 2015 — Vol 24/1
linkmagazine 21
FEATURE:
Mobility Equipment
Life changer
Over $4 million worth of personal
mobility equipment has been
claimed through the National
Disability Insurance Scheme
since its commencement in
July 2013. Link discovered how
new equipment has improved
the quality of life of one family.
Being able to go on a school trip to
the beach is just one of the benefits of
Harry Bolch’s new manual wheelchair,
says mum Kelly.
“Harry’s chair arrived just in time for him
to go on a grade ten school excursion
late last year,” she said.
“There is no way he could have taken
his motorised chair to the beach as it
would have sunk into the sand. If the
chair hadn’t arrived in time we would
have kept Harry home from school that
day as although he is small and light, it
is not very dignified for a boy of his age
to be carried around by adults.”
Harry, 16, lives with his parents, Kelly
and Jason, and younger brother,
Thomas, in Mount Nelson, Tasmania. He
was born with severe athetoid cerebral
palsy, which causes his body to make
involuntary movements. He is non-verbal
and communicates through eye gazing,
is a quadriplegic and is Percutaneous
Endoscopic Gastrostomy (PEG) fed.
“Harry outgrew his old manual chair a
couple of years ago and we were finding
it very difficult to obtain funding for a
new one prior to Harry coming under
the NDIS,” says Kelly.
“Because of Harry’s disability his chair
has a specialised supportive seating
system and the cost was around
$16,000, which we just didn’t have.”
Kelly says Harry also has a motorised
chair, which is ideal for town use but
heavy and difficult to manoeuvre in
tight places and not suitable for uneven
terrain.
22 linkonline.com.au
Harry is all smiles in his new chair.
“The motorised chair is comfortable
for Harry and is kinder on our backs
because we only have to steer it instead
of pushing, but it can’t be lifted up steps,
including curbs, and it can’t go on planes
because of its weight and size. We can’t
take it anywhere we haven’t checked
out beforehand.
“For example, we were invited to a family
friend’s birthday recently and, having
rung the venue to check out access,
we were told we would have no problem
with the wheelchair.
“We arrived to find one big step. Four
big men tried to lift Harry’s chair over it
but they could not manage to get it off
the ground.
“I know it sounds greedy to somebody
who has not been involved with someone
of Harry’s degree of disability, but two
chairs are essential for him.”
The new manual chair also means Harry
won’t have to miss school when his
motorised chair is in for a service or being
fixed. “Previously we had no choice but
to cram Harry into his old chair which he
found very uncomfortable. It was bad for
his posture and we couldn’t send him
to school as he could only sit in the old
chair for short periods of time.”
When it comes to the NDIS, Kelly says
their family’s experience has been positive.
“Life has certainly changed for the
better,” she says. “We have a great
coordinator who actually used to be a
therapist, so she has quite a bit of insight
into a person's life with Harry's degree
of disability.
April 2015 — Vol 24/1
“We are currently reviewing Harry's plan
for the next 12 months and it’s great
that he is so involved and having his
say. While we all recognise that Harry
should have a major say in his plan, our
coordinator also recognises that Harry's
plan impacts our whole family.”
The introduction of the NDIS has also
brought job security for Kelly, who
previously had to use annual leave or
take leave without pay during school
holidays to care for Harry.
FEATURE PRODUCT
“Prior to every school holiday break, year
after year, I'd have to apply to the State
Government and hold my breath to see
if they had any available funding so we
could get a carer for Harry,” she said.
“There was never enough funding to
go around so I always ended up using
all of my annual leave or taking leave
without pay. Thankfully, I work for a
great employer who was very patient
and understanding.
“Jason also had to use all his annual
leave so, for a long time; we were not
able to take leave together for breaks as
a family. Now those hours are a part of
Harry's plan and it's been such a relief
to not have this stress in our lives and
know Harry is happy and cared for.”
A spokesperson for the National
Disability Insurance Agency said under
the NDIS, assistive technology, including
mobility equipment like wheelchairs
and scooters, is provided to support
people with disability to live more
independently and enable participation
in the community and/or employment.
“The NDIS will always respond to
the needs of a person who requires
assistance with mobility through
provision of the most appropriate
equipment. The NDIS will also fund
health practitioners to assist a person
to choose the right piece of equipment
and, when necessary, to teach them
how to use that equipment.”
www.ndis.gov.au
SATELLITE ACCELERATOR
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conditions, making driving the ultimate pleasure.
Designed to be used in combination with the
FS2001 Brake Lever.
www.totalability.com.au
For full product listing & installers
April 2015 — Vol 24/1
call 1300 858 410
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linkmagazine 23
FEATURE:
Mobility Equipment
New Australian invention to benefit
wheelchair users worldwide
A device that enables wheelchairs to
climb up step has been developed by
Northcott Innovation, in partnership
with Mobility 2000 and the University
of Technology Sydney’s Department of
Mechatronic Engineering.
Dubbed ‘The Step Climber’, the device
can be attached to any sized two-wheel
power wheelchair or scooter.
“The Step Climber will mean anyone
using a wheelchair can go up, or come
down, a single step without needing
to buy a hugely expensive piece of
new equipment,” Northcott Innovation
Executive Director Liz Forsyth said.
“It will give people with limited mobility
the opportunity to more easily navigate
public streets and many buildings
throughout the world, further levelling
the playing field and helping to build an
inclusive society.”
Ms Forsyth said Northcott Innovation is
currently showcasing the Step Climber
to potential partners and manufacturers
around the world, with the aim of
securing commercial agreements to
manufacture and distribute the device.
“Our board member, Dr Rob Silberstein,
was recently in Nashville showcasing
the Step Climber and we are convinced
manufacturers will see the enormous
potential this device presents,” she said.
The commercial grade Step Climber
prototype was unveiled at
the opening of Northcott
Innovation on March 31.
24 linkonline.com.au
April 2015 — Vol 24/1
How
do recent
Aged Care
changes affect
me?
Do you need
information on
disability related
issues?
Where do I
get independent
information so I can
make informed
decisions?
Seniors Information Service (SIS) is an independent, charitable organisation that has been
providing support, advice and information for over 20 years to South Australian on ageing,
disability and health issues such as:







Navigating health and social support systems
Retirement housing and low cost rental
Residential aged care
Concessions available for Seniors
Remaining independent in your own home
Digital Literacy and computer training
Mobility equipment - Safety and Support
In addition to a wide range of printed material available free of charge regarding these and many
other topics, SIS offers monthly seminars in our Community Centre on the following topics:






Age Care costs and how the system works
Retirement villages – what to consider before moving
Financial Planning for Retirement – What Should I Know?
Estate Planning (Wills, Assets, Contracts, Pensions, Power of Attorney
and Advanced Care Directives)
Mobility Equipment Safety
Digital Literacy and Cyber Security
Contact SIS for bookings and more information.
HELPLINE: (08) 8168 8776
Country SA: 1800 636 368
149 Currie St, Adelaide
information@seniors.asn.au www.seniors.asn.au
FEATURE:
Mobility Equipment
Mobility aid Meccano
A modular kit of interchangeable
mobility aid parts from crutches
to walking frames is set to
change the lives of some of
the world’s poorest people with
disabilities thanks to a design
engineering student from Brunel
University London.
Twenty-one-year-old Cara O’Sullivan
realised the opportunity after a year’s
placement with Surrey-based charity,
the Medical Engineering Resource Unit
(MERU).
“The changes that MERU products
can make to the lives of children with
disability inspired me to fundraise to
manufacture a range of the products
for a charity called Kiya Survivors, which
offers support to young people with
disabilities and their families living in
poverty in Peru and Tanzania,” she said.
“Whilst visiting Kiya Survivor’s
physiotherapy centre in Peru, I realised
that while the developed world can be
generous in donating unwanted walkers
and crutches, they come from a wide
variety of different manufacturers and so
perfectly good parts from one walking
aid can’t be used to repair another one.
“When it came to developing a project
for my final year (at uni) it was clear that
I could use my design and engineering
skills to help not only the youngsters I
had met in Peru, but those in similar
circumstances around the world.”
The project has seen Cara design core
interchangeable components which
work together like Meccano and, just
like the toy, can be easily and quickly
disassembled and re-used.
“By being so adaptable, the walking
aid will be able to meet the user’s
exact needs and provide the required
support throughout changes in their
condition,” she said. “The system is
more sustainable and cost-effective
because the walking aid will gradually
evolve with the user rather than having
to get an entirely new aid each time their
condition changes."
As part of the project, Cara will produce
a design manual for the modular parts
so they can be made by the many
thousands of skilled developing world
craftsmen and mechanics who keep
cars, trucks and bikes running with little
or no access to spare parts.
“Harnessing their incredible skills and
inventiveness will be the key to achieving
widespread adoption, and fits in with the
ethos of helping build long-term local
economies rather than simply donating
finished goods.”
Cara’s project will be featured in the
Made in Brunel Exhibition in London
from 18-21. Visit www.madeinbrunel.
com for details.
Cara O’Sullivan with her Meccano-inspired mobility aids.
26 linkonline.com.au
April 2015 — Vol 24/1
Ship shape
So you’ve bought a new
wheelchair or mobility scooter
but how do you keep it looking
good? We asked the experts at
AC Mobility to give us their tips
on keeping your equipment in
good working order.
• Give your wheelchair or scooter a
good clean regularly, if not daily, and
especially after you’ve been out in
the rain.
• For the driver’s seat upholstery, use
soapy water but wring out the sponge
or cloth before scrubbing. Don’t use
the device until it is completely dry.
• For the frame, wipe with a damp cloth
but be sure not to splash/spray the
wheelchair with water, as doing so may
damage the motor, electrical wiring
and battery.
• If compressed air is available, use this
to clean your wheelchair or scooter.
But don’t exceed 7K and keep the
nozzle at least 10cms away from your
device.
• For the casing, wipe with a damp
cloth. Once dry, coat the casing with
a light layer of wax, if desired.
April 2015 — Vol 24/1
Bob and Ian in the workshop at AC Mobility.
• Service your chair or scooter once
a year. This will make sure that
issues are picked up before they
become serious, and can help avoid
breakdowns. During the service the
ball bearings, tyres and batteries will
be checked, and nuts and bolts will
be tightened if required.
• And if something goes wrong with
your chair or scooter then make sure
you take it to a reputable company
for repairs. Perth-based AC Mobility
has introduced a mobile repair
service for wheelchairs, scooters
and other rehabilitation and mobility
equipment. All repairs are guaranteed
and performed by experienced
technicians.
linkmagazine 27
FEATURE:
Mobility Equipment
Safety first
Mobility insurance specialist,
Blue Badge Insurance, has
launched a safety and awareness
campaign to encourage the
community to be more aware
of mobility scooter users.
“Motorists need to be more alert as the
low profile of these devices can make
them hard to spot,” says Blue Badge
chief executive Nikolas Witcombe.
“Councils need to maintain footpaths
and provide ramps to protect riders
from having to use the road. And, as a
whole, if everyone just took more notice,
then fewer accidents would happen.”
“There are currently 120,000 mobility
scooter users Australia-wide with
numbers growing at around nine per cent
annually and expected to reach 280,000
within ten years,” says Mr Witcombe.
He said the need for a safety and
awareness campaign was supported by
the recent Blue Badge Mobility Scooter
Safety and Insurance Survey, which
revealed that 25 per cent of mobility
scooter users had been involved in an
Blue Badge chief executive Nicolas Witcombe.
The campaign comes as the number
of mobility scooters on our footpaths
climbs rapidly.
Stay safe
Tips for the general public from Blue
Badge Insurance:
Keep an eye out for mobility scooters
as you go about your day.
Double-check footpath traffic when
reversing your car, particularly from
driveways.
For mobility scooter users:
If you encounter a mobility scooter on
the road, slow down and allow at
least a metre gap when passing them.
Be seen! Consider purchasing safety
equipment including flags, lights and
reflectors.
Give mobility scooter users plenty of
time to cross the road.
Watch out for vehicles leaving and
entering driveways, never assume the
driver has seen you.
As a pedestrian, be prepared to give
way to scooters if the footpath
narrows or is under construction.
Don’t obstruct access - keep your bins
off the footpath.
Keep vegetation in front of your house
maintained so it doesn’t encroach
onto footpaths.
28 linkonline.com.au
Stick to footpaths. Only ride on roads
if there is no footpath and ensure you
can be seen.
Only cross roads at pedestrian
crossings and wait for the green light.
Don’t block pedestrian access when
you park your mobility scooter.
Adjust your driving to the conditions
and don’t use slopes that are too
steep.
Make turns slowly and approach
ramps and kerbs head on.
Keep the load down – don’t carry too
many parcels.
*These safety tips are not a substitute
for specific professional advice and
product training. Blue Badge Insurance
recommends that you always speak to
a health professional and personally try
out mobility products to ensure suitability
before purchasing.
www.bluebadge.com.au
April 2015 — Vol 24/1
accident at some point and 38 per cent
were involved in a near-miss at least
once a year.
“The survey showed that most mobility
scooter users are perfectly confident
when it comes to operating their device,
but it is external factors out of their control
they fear most,” Mr Witcombe said.
Of those surveyed, cars reversing out of
driveways worried 33 per cent, 31 per
cent felt at risk when crossing the road,
52 per cent said cracks in the footpath
were an issue in their local area and 41.5
per cent found a lack of footpath ramps
a barrier to getting around.
Twenty-five per cent of
mobility scooter users
had been involved in an
accident at some point
and 38 per cent were
involved in a near-miss.
Despite these concerns, Mr Witcombe
said very few mobility scooter owners
and electric wheelchair users held
comprehensive insurance.
“Forty-five per cent of current mobility
scooter users are not insured at all
and 46 per cent of those who believed
they are covered by their home and
contents insurance, could in fact be
underinsured,” he said.
“Some home and contents policies cover
a mobility scooter while it’s at home,
but not necessarily once they leave the
house. For peace of mind, we would
urge all mobility scooter users to check
they are comprehensively covered.”
Action NG
Family Range
Action®4 NG
®
• Lightweight wheelchair
• Double crossbar
• Highly configurable with a
huge range of options
• Available in different versions
like hemiplegic, one arm drive,
double handrim, transit and
heavy duty (up to 160kg user
weight)
The ‘next generation’ of out of the box, customisable wheelchairs has
truly arrived. They are a real family of foldable wheelchairs sharing many
options. Product weights starting as low as 10kg weight capacity as
great as 160kg and widths from 8-24” and depths 8-20”.
Parts are cross compatible and
interchangeable throughout the
Action® NG range.
www.invacare.com.au
April 2015 — Vol 24/1
linkmagazine 29
FEATURE:
Mobility Equipment
Travelling light
New Zealand, America, Hong Kong,
London and Paris are just some of the
exotic locations that intrepid traveller
Scott Sanderson has explored thanks
to his Luggie scooter.
Melbourne-based Scott, who has
Multiple Sclerosis and finds walking
long distances difficult, says the Luggie
scooter has helped him travel to many
overseas destinations.
“My wife and I very much enjoy travelling,”
he said. “I purchased a Luggie Scooter
three-and-a-half years ago and have
used it extensively both at home and
overseas. The Luggie has been reliable,
easy to handle with fantastic range
and capable of travelling on all sorts
of terrain.
“With the Lithium-ion battery the scooter
is light enough to be folded and lifted and
put into motor vehicles, especially taxis.
“It’s easy to fold up to put on an
aeroplane and easy to handle in my
wheeled carry bag. And you can travel
with it on aeroplanes at no extra charge.”
An internationally known brand, Scott
was able to pick up a spare battery in
London, which gave him the extra range
when he wanted to explore further afield.
“Although I was able to buy a spare
battery in London, I would also
recommend taking one with you. I carried
it under the seat to greatly increase my
range when exploring Paris."
Scott Sanderson says the Luggie has helped
him travel the world.
Problem with your
telephone, mobile phone
or internet service?
The Telecommunications Industry
Ombudsman is a free and independent
dispute resolution service for
people with complaints about
telecommunications or internet services.
If you have tried to resolve a complaint
with your phone or internet service
provider, but are not making any
progress then contact the TIO.
Website
Freecall
Freefax
TTY
Interpreter service
www.tio.com.au
1800 062 058
1800 630 614
1800 675 692
131 450
The TIO may
be able to help.
30 linkonline.com.au
April 2015 — Vol 24/1
Beyond the footpath
Sticking to the path may soon be a
thing of the past for wheelchair users,
with a United States-based social
enterprise launching an off-road chair.
veterans who want to get back on the
trail, to parents who want to roll off the
pavement to watch their kids’ soccer
games,” says Tish.
Likened to an arm-powered mountain
bike, the Freedom Chair by Grit enables
people to travel off-road on rough terrain,
such as trails, in parks and other places
where regular wheelchairs get trapped.
“We’re (also) working on a special beach
kit.”
Grit chief executive and co-founder, Tish
Scolnik, said the chair had been developed
after close consultation with wheelchair
users and bicycle retailers across the
United States, and is being promoted
via an online crowdfunding initiative.
“The Freedom Chair appeals to a wide
audience of riders, from returning
Wheelchair user Stephen Pento said
the Freedom Chair was faster and more
mobile that his everyday chair. “As for
getting out and having a good time
off-roading, this is much better. This
is great.”
The Freedom Chair is currently only
available to Australian customers via
Grit's website, however a local distributor
is likely to be announced soon.
Back on the road
Jenny Giaccio is over the moon
about the Royal Automobile of South
Australia’s new roadside assistance
service for mobility scooters.
“The RAA blokes who come out to
help are just wonderful,” says Jenny,
from Adelaide’s north. “I’ve called them
several times for flat tyres and when the
engine wouldn’t start - one time they
even called me an access cab to get
me home from the shops.”
Having used a scooter for over two
years due to arthritis and a golden staph
infection in her ankle, Jenny participated
in a 12-month pilot program run by
the RAA prior to the service’s official
introduction in November last year.
RAA Senior Manager Mobility and
Automotive Policy Mark Borlace said
the popularity of mobility scooters, along
with the fact that 40% of RAA members
are aged over 60, were reasons behind
the program.
“We understand many of our members,
as they age, either choose not to drive
April 2015 — Vol 24/1
as often any more,
or use a mobility
scooter as their sole
mode of transport,”
Mr Borlace said.
During the trial
period, flat tyres
and flat or faulty
batteries were the
most common
breakdowns
reported to the
RAA.
“In many cases the Patrol attended the
member’s home to help them out after
they found their scooter had a flat tyre
or wouldn’t start just prior to taking a
trip,” Mr Borlace said.
“If the member is located on the roadside
when their mobility scooter breaks down
though, our patrols will do all they can
to get it going again. If it’s not possible,
they’ll make arrangements to get the
member and their scooter home or to
a place of repair.”
Roadside assistance for mobility
scooters is available to RAA Road
Service Members in both Adelaide and
regional SA.
The NRMA in New South Wales and
RACQ in Queensland advised Link
that they provide free assistance to
mobility scooter and wheelchair users
as a community service. We suggest
people check with their local motoring
association to check what level of cover
is available.
linkmagazine 31
Link: Advertorial
Latest mobiles smarter
than you think
Access to the internet and digital
technology is well recognised as
being central to social, cultural
and economic participation.
N
But how would you connect if you
couldn’t talk? How would you answer
the phone, have a conversation with your
friend, or order a sandwich at the café?
This is the reality faced by people with
complex communication needs every
day, all of their lives.
In Australia, thousands of people have a
severe or profound communication disability,
also known as Complex Communication
Needs (CCN). These numbers will likely
rise as our life expectancy increases and
the population ages.
Thankfully, tablet and mobile technologies
are offering new opportunities for people
living with CCN. To tap into this potential
the Telstra Foundation is partnering with
the Independent Living Centre (ILC) NSW
to explore how new mobile and tablet
technologies can be used to improve
connectedness.
Following the success of a pilot project
delivered in metropolitan, regional
and rural areas of NSW, the Everyone
Connects project will now be rolled out
across Australia. Through the project, we
aim to increase awareness of assistive
technologies, including mainstream
mobile and tablet technologies,
accessories and accessibility options.
The pilot project demonstrated how many
young people with severe disability have
little or no opportunity to experiment
with and learn how to use technology
– specifically smart devices – and
participate using social media. As part
of the next phase of the project, young
people (aged 12-25) and adults with CCN
will attend workshops delivered by speech
pathologists and occupational therapists
to learn and trial a range of technologies
32 linkonline.com.au
including tablets, smartphones, software
and apps – many for the first time.
This is so important because the use of
smartphones and tablets is now almost
ubiquitous - 89% of Australians aged
18-75 own a smartphone, 60% own a
tablet and increasingly many households
have both. With accessibility now being
built right into the operating systems
of smartphones and tablets, as well as
many apps and websites, individuals
are increasingly able to personalise their
device to meet their specific needs. The
challenge is how to ensure people are
aware that these features exist and know
how to use them.
To this end, Telstra recently launched a
Find Accessible Devices portal on our
website. The site helps our customers
with sensory or physical limitations to
find the phone that's right for them,
using filters for vision, hearing, dexterity,
cognition and hardware to screen a
range of accessibility features. This is
a small but important step in helping
people to get the most out of their
communication technologies.
• You can email the Everyone Connects
team on everyoneconnects@ilcnsw.
asn.au to learn more about the
CCN project. Resources developed
through the ILC’s (NSW) project
will all be publicly available via their
website www.ilcnsw.asn.au
• To visit Telstra’s Find Accessible
Devices portal go to www.telstra.com.
au/mobile-phones/find-accessibledevices/#gari-features/
April 2015 — Vol 24/1
15138-NRS-App
1513
The
NRS
app
NRS app
The
a smart way to make
a
smart
way
to
make
relay
calls
relay calls
• a convenient new way to
• a convenient
way to
access
NRS callnew
options
access NRS call options
• extra call-support functions
• extra call-support functions
• both apple and android
• both apple and android
• a world first for the NRS!
• a world first for the NRS!
find out
find
out
more:
more:
www.relayservice.gov.au
www.relayservice.gov.au
A phone solution for people who are deaf
A phone
solution
people
who are deaf
or have
a hearing
orfor
speech
impairment
11/14
11/14
or have a hearing or speech impairment
April 2015 — Vol 24/1
15138-NRS-App-advertisement-01.indd 1
15138-NRS-App-advertisement-210x285-02.indd 1
linkmagazine 33
4/03/15 3:24 PM
16/03/15 3:38 PM
Link: Interview
Keeping it
under control
In mid-2012 Jillian Kingsford Smith’s life changed dramatically. The owner of a
successful digital marketing agency in Brisbane, the high achieving 42-year-old
started to feel exhausted and unwell, but she put the body aches and pains down
to a bad case of the flu and the stress of dealing with a messy marriage break-up.
A few days later, her condition worsening and suffering from dizzy spells, Jillian
visited her GP and was promptly marched off to the Emergency Department of
the local hospital. Within 24 hours of admission she was diagnosed with Multiple
Sclerosis (MS). But it didn’t end there. Ten weeks later she found a lump in her
breast and was diagnosed with breast cancer, later undergoing a mastectomy,
followed by stage one of a reconstruction and the removal of 28 lymph nodes.
Grappling with what the MS diagnosis
meant for her future and desperate for
accurate information, Jillian decided to
write a self-help book for people newly
diagnosed with MS. The result, Taking
Control, became a best-seller. “Writing a
book about MS was equal parts defiance
and denial,” Jillian says. “I remember
lying in my hospital bed just after I was
told I had MS and wondering what my
plan of action would be. The first thing
I did was Google ‘MS’ and it was the
worst thing I could have done. There
were a million entries about the topic but
nothing that gave me what I was looking
for. I was looking for someone to give me
'the plan.' I wanted it laid out for me.”
In May she will release a follow-up book,
Taking Control Together, which offers
advice to partners, family members,
friends and carers of people with MS.
It includes interviews with 15 people
who have a loved one with MS, including
Tim Ferguson’s wife, Stephanie Mills,
and 1990s supermodel, Emma Balfour,
whose parents both have the condition.
Link talked to Jillian about managing
her MS and why health should be our
number one priority.
In Taking Control you display a high
level of rationality and a strong focus
on problem-solving, even during the
early stages of diagnosis. How did you
34 linkonline.com.au
maintain such a level-headed approach
and did emotion ever take over?
There were certainly times when emotion
took over. I remember howling and
screaming into my pillow on many a dark
night. I was in a constant state of disbelief
yet I never once thought ‘why me?’ It
was more a case of getting through each
day; getting through the pain or getting
through the confusion. I knew that I may
potentially get worse before I got better, but
I accepted that everything was a process
I had to go through. So on those dark
nights it was just getting the emotion out
so I could find some form of release and
then knowing that every day I put behind
me was a day closer to getting though all
the horrible treatments and towards being
able to move on with my life.
As for remaining level-headed, I think
there were a few factors at play. Firstly, I
wasn’t about to be defeated by anything
that was going on. I just didn’t see any
alternative. Wallowing wasn’t going to
make the MS nor breast cancer go away.
Neither was ignoring it. I had to tackle
everything head on. I had to refocus.
Part of that was immersing myself in
my writing. It was easier to talk about
other people’s problems than confront
my own. The whole journey has really
given me a new sense of balance and
certainly a more empathetic outlook
towards the world.
You say you were frustrated by the
lack of information on MS that was
available. Has this improved since
your diagnosis?
In a way, I think the opposite has
happened. I think we’ve seen an increase
in the information out there, in the form
of blogs and social media. It’s never been
more important to ensure you're getting
your information from a reliable source.
In the last two years I’ve seen enormous
amounts of information publicised about
new miracle treatments, neither of which
stood the test of time.
April 2015 — Vol 24/1
Multiple Sclerosis
occurs when cells in
the body's own immune
system enter the central nervous
system and cause inflammation
to the brain, spinal cord and optic
nerves, often resulting in impairment
of motor, sensory and cognitive
functions. An estimated 23,000
Australians have MS.
Visit www.msaustralia.
org.au for more
information.
And due to the easy accessibility and
volume of information in the public domain,
everyone is an expert. If it’s one thing
I’ve learned, it’s that everyone’s disease
course is different and there’s no ‘one size
fits all’ approach. It’s important to work
out who you can trust and what media or
organisations will provide you with reliable,
positive and rational information.
As well as being a great resource
on MS, Taking Control reminds us of
the importance of making our health
a priority. Did you set out to do this?
Without a doubt. I knew my own poor health
was to blame for the double diagnosis
of MS and breast cancer. While being
diagnosed with two fairly serious diseases
within weeks of each other is dramatic,
the way I let my life become unhealthy,
overly cluttered and busy is actually fairly
April 2015 — Vol 24/1
normal for most people. And when you
let it all get out of control it can have dire
consequences. Since the release of the first
book, I’ve gone on to be a strong advocate
around the importance of prioritising your
health – physical, mental and emotional.
There is nothing more important - your
health can slip away from you all too easily
and none of us are bulletproof. But the best
thing is, prioritising your health is actually
the easiest thing in the world to do once
you place the highest value on it.
Your new book focuses on the role of
friends, family and carers in managing
MS. What role did (and does) your
family play?
My family are the reason I’m writing Taking
Control Together. They have been my
strength through this little adventure but
I wondered that if they were my strength,
then who was supporting them? Chronic
disease or disability affects far more than
just the person diagnosed. It can be a
steep learning curve and a very confusing
and emotional time for those closest to
the person living with the illness - be it
their parents, spouse, siblings, children
or friends. You can talk about support in
so many ways, be it physical, financial,
emotional or even via sharing your
knowledge or wisdom. My family have
certainly supported me in all of those
ways but, most importantly, my family
are my cheer squad. They cheer me on
when things are great and pep talk me
when things are tough. So many things
in life are constantly changing when you
are living with a disability so to have that
constant and unwavering support and
encouragement from the key people in
your life is priceless.
linkmagazine 35
Link: Interview
Is there a favourite interview in
the book or piece of advice that
particularly resonated with you?
So much of what everyone said resonates
with me and while I hope I’ve created
something that helps a lot of other
people, writing the book also served
as informal therapy for me. Tim Ferguson
was instrumental in inspiring me to follow
my passion of writing books full-time. He
taught me that living with a disability is
essentially a trade-off and that you have
to learn to be adaptive very quickly, and
if you can learn those two skills then you
can create a very successful and fulfilling
life. Another piece of advice came from
Linda, who was actually one of the first
people I interviewed. At that point of
my diagnosis I was waking up every
morning and my first thought would be
‘bugger…I’ve got MS.’ She counselled
me that she too felt the same early in her
diagnosis and that the feeling does go
away after a while and is replaced with
more normal thoughts. I think both bits
of advice are great for anyone with any
disability or chronic illness.
How is your health now? What's your
current treatment regime?
To be honest, I think I’m healthier now
than I’ve ever been in my life, despite
dealing with a double diagnosis of both
MS and breast cancer over the last 2.5
years. Physically, you would barely
recognise anything is wrong. While I feel
that my mobility is declining somewhat,
36 linkonline.com.au
I only use a stick about 50% of the time
and this is mainly because the dizziness
and vertigo are so overwhelming. I’ve
had to become more selective about
what I use my mental and physical
energy on and that means I only go out
to public events that are important to
me or that will uplift me.
My treatment regime is tricky. The way
you would treat cancer is pretty much
the opposite of how you would treat
MS. In layman’s term, you want to build
your immune system up when treating
cancer, yet dampen it somewhat when
treating MS so as it stops attacking
your brain. My team of specialists and I
decided it was more important to treat
the cancer and get it out of my system
and I personally want to be at least five
years’ cancer free until I even consider
an immune-modifying treatment for the
MS. So, basically, the rest is up to me.
I can’t rely on drugs to keep the MS
from progressing, so I instead have to
rely on taking control of my health. Diet,
rest, exercise, sunlight and water is my
mantra. I follow a very low saturated
fat die; I ensure I look after my energy
levels and get the appropriate amount of
rest. I do reformer pilates several times
a week to help work on my balance
and coordination. This has been a game
changer for me as I now feel stronger
and more confident.
Taking Control and Taking Control
Together are available from Jillian’s
website www.take20stories.com
Jillian’s top
tips for dealing
with MS
Tackle the disease head on and
how you allow the symptoms to
effect you. You can choose to lose
control or you can choose to take
control.
As often as possible, take the
pressure off yourself and have
a laugh. Surround yourself with
positive fun people who don't treat
you any differently.
Knowing that you have a disability
doesn’t make you 'less' in any way.
The learning and inner strength
that comes from it can help you
redirect and enjoy your life even
more.
If at all possible, take some time
off to rest and heal after your
diagnosis. The first year or two
are a huge period of adjustment
– physically, mentally and
emotionally.
Never be afraid to ask a doctor or
specialist to explain something as
many times as it takes for you to
understand it.
April 2015 — Vol 24/1
Link: Disability Care
In sickness and in health
Lynn Geddes’ unwavering
commitment to her
husband’s rehabilitation
after an horrific accident
six years ago has earned
her the Continence
Foundation of Australia’s
Carer of the Year award,
writes Maria Whitmore.
Six years ago, a pallet of paper fell off the
back of a semi-trailer and onto the head
of interstate truck driver Paul Geddes.
Days after the accident, doctors urged
his wife, Lynn, to turn off his life support,
telling her he would never recover from
his horrific brain injuries. She refused.
Nor would she send Paul, then aged 60,
to a nursing home when he emerged
from his coma three weeks later.
Rather than give up hope, Lynn gave
up her factory job in Albury, and at the
age of 52 began the daunting task of
rehabilitating her husband at home in
Holbrook, southern New South Wales.
Paul’s health suffered another setback
six months later when surgeons operated
on the worst of the brain aneurisms
triggered by the accident, and he
suffered a devastating stroke. He came
home for good after the operation and
now, with the help of a paid carer eight
hours each weekday, Lynn manages
Paul’s rehabilitation.
A typical day starts before he’s even out
of bed when she takes him through his
arm and leg stretches. After toileting,
showering and dressing him she starts
the regime of exercises that go on all day,
interrupted by meals, toileting and the
odd half-hour break when he is strapped
into his easy-stand exerciser in front of
the telly.
Every day he has a work-out on the
antiquated exercise bike, which involves
April 2015 — Vol 24/1
Paul and Lynn Geddes
shoving his wheelchair up
possible so he can reach
strapping his feet in the
wedging chocks into the
doesn’t slide. It takes two
it’s back-breaking work.
as close as
the pedals,
pedal, and
frame so it
people and
Throw in daily reading and writing
sessions with a white board and you
have a typical day at the Geddes’. And
of course there’s the cooking, cleaning,
shopping and laundry for the family,
which includes two adult children living
at home – one with Asperger’s, the other
with autism.
Attention to her husband’s toileting
has paid off and Paul is now virtually
accident free, even though he still wears
incontinence products during the day
and a uridome at night.
Lynn’s motivation is fuelled by his
extraordinary progress that everyone,
including the experts, agrees would not
have happened without her unwavering
commitment. Paul can now walk short
distances and pull himself up onto the
commode unassisted.
“It’s taken five years to get to where
we are and everyone can notice the
improvement,” Lynn said.
For advice and support on bladder and
bowel management visit continence.
org.au
linkmagazine 37
Link: Travel
River
city
shines
Brisbane has plenty to offer travellers with disability,
discovers travel writer Marayke Jonkers.
As I sit aboard the wheelchair accessible
ferry gliding beneath the Storey Bridge
it’s easy to understand why Brisbane
is nicknamed the River City. The river
snakes its way through major attractions
and is the heart and soul of the city,
providing the backdrop to some of
Brisbane’s most breathtaking scenery.
What is a surprise are the hidden gems
for travellers seeking accessibility.
My journey began leaving the wheelchair
friendly train station, where I encounter
Australia’s longest Braille Trail on the
Queen Street Mall and tactile street signs.
A trial is currently underway to have the
world’s first ‘speak hear’ signs along the
1.6-kilometre trail which, in the future,
may speak directly to a user’s mobile
38 linkonline.com.au
phone via Bluetooth, providing fun and
informative facts about each location.
extraordinary wooden sculpture of Mary
McKillop in Old St. Stephen’s Church.
My base for my Brisbane adventure is The
Point Hotel, Kangaroo Point, which has
everything from a swimming pool to gym.
More importantly, the bathroom access
is great - I could see in the lowered mirror
to apply make-up before heading out
to enjoy Brisbane’s culinary offerings at
Lamberts restaurant downstairs, then
to Queensland’s Performing Arts Centre
(QPAC) for a performance of the colourful
Nutcracker Ballet at the Play House.
Once you’ve travelled along the river
by boat, why not view it from the air on
Southbanks’ Wheel of Brisbane. With
ramped access to the gondola you can
sit back and enjoy an audio tour.
Next morning I explored the city with
a passionate local on a free Brisbane
Greeters tour. Our cheerful guide, Anne
Marie, soon had us visiting historic
sites such as Customs House, and the
From the natural beauty of Southbank,
to historical buildings, music festivals
and fine dining there is something to suit
everyone’s taste in the River City – and
with a little pre-planning most of it will
be accessible.
Visit www.marayke.com for more travel
information on Brisbane.
*The writer was a guest of The Point Brisbane,
Lamberts Restaurant, Wheel of Brisbane and
QPAC.
April 2015 — Vol 24/1
Top free
things to do
in Brisbane
South Bank – markets, waterfront
dining, buskers and a patrolled manmade beach. Take a ‘selfie’ with the
iconic ‘Brisbane’ sign created by people
with disabilities through ‘Monte Lupo’
for the Brisbane G20.
The Riverwalk – stunning views of the city
on this floating walkway along the river.
City Hopper tour – the red and whitechecked City Hopper ferries are free and
take a loop around the Brisbane River.
A great way to reach your destination
or you can also do the full loop for a
beautiful overview of the River City.
Departing every 30 minutes ramped
wheelchair access is provided, however
at low tide the angle is steep so you may
need assistance in a manual wheelchair.
Brisbane Greeters tour – from historical
sites to food and shopping themed tours
there’s something for everyone. If you
book in advance and mention your
access needs the guides in bright red
T-shirts will be more than equipped to
create a suitable route through the city.
Visit the Cultural Centre – this riverside
precinct includes Queensland Art Gallery
and Gallery of Modern Art (QAGOMA),
Queensland Performing Arts Centre,
State Library of Queensland, and the
Queensland Museum and Sciencentre.
Botanic Gardens all abilities
playground – with green turrets and
multiple play stations this new playground
creates quality play facilities where
children of all abilities can play together,
including children who use wheelchairs.
Brisbane Town Hall Mobility Centre –
home to accessibility maps, wheelchair
hire and electric mobility device charging
stations.
Photo L–R: The Wheel of Brisbane. Marayke with Brisbane greeter Anne Marie
Courtesy of Marion Jonkers Photography
April 2015 — Vol 24/1
linkmagazine 39
REAL STORIES. REAL
The Australian Training Awards are the peak, national awards for the vocational education
and training (VET) sector. The Disability Training - Employer Award is one of 18 categories
at the Australian Training Awards. The award recognises employers who demonstrate
outstanding outcomes from the provision of nationally recognised training* to staff with
disability. Applications are now open for this award and close on 29 May 2015.
Train2Learn - 2014 Winner
Brite Institute - 2014 Finalist
Train2Learn is a registered training
organisation in Victoria providing nationally
recognised training in foundation skills,
food processing and warehousing for
people with a range of disabilities.
Through collaboration with TAFEs and
private training providers across Victoria,
Train2Learn’s industry-led, workplacebased learning education programme
was awarded the inaugural Disability
Training Initiative Award (known as the
Disability Training – Employer Award from
2015) at the Australian Training Awards for
its outstanding training practices.
“Train2Learn endeavours to ensure
every Australian is given the chance
to be a part of society. Our passion,
determination and willingness to
be robust and flexible in an ever
changing sphere of education, job
services and national policy is the
foundation of our organisation,” said
Kevin Hall,Train2Learn’s Business
Development Manager.
Train2Learn works with Australian Apprenticeships Centres
and group training organisations to modify workplaces to
accommodate students with a range of disabilities, cultivating
inclusivity and participation acceptance. More than 300 clients
with disability have been supported to return to work. Since the
beginning of this year, Train2Learn has supported its community
enterprises to employ all of the disability clients as direct
employees and provide them with ongoing part time outcomes
which support reductions in disability support payments for
clients and assists them returning back into mainstream work.
“Our collaborative employment programs with these partners
have seen 90 per cent of our clients return back to work
and cease receiving benefits. Their stories of overcoming
intergenerational unemployment because of education and
employment are really inspirational,” Kevin said.
Brite Institute provides training and
employment services to people
with disability and to people in the
community experiencing vocational
disadvantage, in order to maximise
equity and access to a better life.
In 2014, Brite was a finalist in the
Disability Training Initiative Award
(known as the Disability Training –
Employer Award from 2015) at the
Australian Training Awards.
Executive Officer of Brite Institute,
Jan Roberts is proud of the
organisation’s achievements. She
says, “Being part of the Australian
Training Awards was a huge honour
given it was the award category’s
inaugural year, and the fact that
Brite has been a service provider
to people with disability for more
than 35 years.
“The Australian Training Awards is a fabulous opportunity to
acknowledge the work of employers and public and private
training providers. It was fantastic to network and become
familiar with some of the innovative practices of other
organisations,” Jan said.
Brite provides accredited training in industry sectors including
home and community care, disability support, horticulture
and competitive manufacturing. Brite provides supported
employment through its BritePak and Brite Plants divisions.
These divisions give Brite’s employees the opportunity to
develop work and social skills in practical and supported
environments. BritePak, Brite’s manufacturing and contract
packaging division, allows employees to participate in tasks
ranging from simple one-step tasks to high volume assembly
tasks with multiple steps. At Brite Plants, employees work
with plants, shrubs, trees and potted plants in their training
of all aspects of nursery and plant production.
*
Nationally recognised training qualifications are based on 'Training Packages'. A training package is a set of nationally endorsed standards and qualifications
recognising and assessing people's skills in a specific industry, industry sector or enterprise.
40 forlinkonline.com.au
April 2015 — Vol 24/1
ACHIEVEMENTS.
Be recognised nationally for your provision of vocational
education and training to people with disability by entering
the 2014 Disability Training – Employer Award. Find the
selection criteria and application form on the Australian
Training Awards website.
Activ Pathways - 2014 Finalist
Activ Pathways offers programmes to
people living with disability and the
disability sector workforce. In 2014,
Activ Pathways was one of the top
three employers in Australia when
it became a finalist at the Australian
Training Awards.
“We are extremely proud of this
achievement. It has motivated us to
continue with our journey supporting
people with a disability across the
sector to achieve their goals through
recognised training,” said Trish Ridley,
Manager of Activ Pathways.
“We applied for the Award because we
were aware of our own achievements
in this area and wanted recognition not
only for our own team but for people
with a disability. The application process
was online and easy to manage with
plenty of clear instructions. We were very proud to be involved
in the Australian Training Awards and hope to be part of the
awards again,” Trish said.
Since 2009, Activ Pathways has delivered training to more
than 5000 people, including 1600 living with disability with
a completion rate of 97 per cent. Activ Pathways is the only
disability enterprise in Australia to deliver the Certificate I in
Leadership Development. Also available are the Certificate I in
Transport and Logistics, Certificate I in Agrifoods, Certificate
I in Business Certificate II in Horticulture and Certificate I in
Manufacturing It also provides traineeships, offering more than
45 in 2014 such as school-based traineeships for the Certificate II
in Community Services and Certificate III in Disability programs.
There are 18 awards presented by the Australian Training
Awards to individuals, businesses and registered training
organisations. A majority of the awards are available by entry
through state and territory training awards programs. Seven
of the award categories are available by direct entry to the
Australian Training Awards. Categories include:
Individual
•
•
•
•
•
•
•
•
•
Lifetime Achievement Award*
National Achievement Award*
Australian School-based Apprentice of the Year Award
Vocational Student of the Year Award
Aboriginal and Torres Strait Islander Student of the Year Award
Australian Apprentice (Trainee) of the Year Award
Australian Apprentice of the Year Award
VET Teacher/Trainer of the Year Award
Excellence in Language, Literacy and Numeracy
Practice Award*
Business
•
•
•
•
•
Small Employer of the Year Award
Employer of the Year Award
Australian Apprenticeships - Employer Award*
Disability Training - Employer Award*
Industry Collaboration Award
Registered Training Organisation
•
•
•
•
Small Training Provider of the Year Award
Large Training Provider of the Year Award
International Training Provider of the Year Award**
School Pathways to VET Award*
*
Applications for these awards are made directly to the Australian Training Awards.
**
Applications for these awards are made directly to the Australian Training
Awards except in Western Australia where applications must be made to the
WA Training Awards.
Find the Australian Training Awards on
www.australiantrainingawards.gov.au
02 6240 8155
australiantrainingawards@education.gov.au
April 2015 — Vol 24/1
linkmagazine 41
Link: Music
This isn’t
Disneyland
There’s a new girl band in town
and their catchy, thoughtprovoking tunes are set to have
them following in the footsteps
of the Spice Girls and Destiny’s
Child. Anthea Skinner reports.
The Sisters of Invention - Aimee, Annika,
Caroline, Jacki and Michelle - are based
in Adelaide, and all five members have
learning disabilities. After singing
together for three years, they have just
released their first music video called
This Isn’t Disneyland.
The women first met while performing
with Tutti Arts, Adelaide’s leading inclusive
arts organisation. Tutti Arts began as a
choir for people with intellectual disability
in 1997 but has since grown to support
both visual and performing artists with
disability in integrated programs across
Adelaide and rural South Australia. The
Sisters of Invention is still managed and
supported by Tutti Arts.
This Isn’t Disneyland, directed by Katrina
Lucas, aims to break down stereotypes
about the lives of people with learning
disabilities. Sick of being treated like
child-like fairytale characters, the Sisters
sing “This isn’t Disneyland, I’m not a
novelty, this is as real as it gets”.
In the video, the Sisters first appear
dressed as Disney characters but
then reject these idealised images of
themselves, tearing off their costumes,
clipping their fairy wings and chopping
off Rupunzel’s locks, to reveal outfits
more fitting to their true personalities.
They go on to break, burn and destroy
a range of soft toys, refusing to be cast
in the role of children, instead donning
sexy outfits and embracing symbols of
their disabilities, like wheelchairs and
prosthetic eyes.
42 linkonline.com.au
While the message behind This Isn’t
Disneyland is powerful, that is not reason
enough to buy this song. The true strength
behind the Sisters of Invention is the
quality of their music. In an interview
with The Daily Life, band member Annika
said of the song, “The reason we wrote
it was because someone told us we
shouldn’t be recording our songs and
should only be singing for school kids”.
Well, they certainly proved their point, and
have produced a memorable song, with
crystal clear vocal lines that will leave you
humming their tune for hours. The band
have also garnered international acclaim,
with This Isn’t Disneyland being featured
on the BBC, screened at the United
Nations Headquarters in New York and
played on QANTAS inflight entertainment.
The group doesn’t feel that their disabilities
have held them back creatively. Indeed,
for Annika and Aimee, their disabilities
seem to have actually helped, rather than
hindered their performances. Annika,
who is blind and has a mild intellectual
disability, has perfect pitch, allowing her
to identify any note she hears. Aimee has
Williams Syndrome, which causes hypermusicality and a heightened sensitivity
to sound.
This Isn’t Disneyland is the first song
from the Sisters debut album, which will
be released this year. The songs draw on
the women’s life experiences and range
from happy to heartbreaking. The Sisters
of Invention are proving that their lives
aren’t fairytales, and that their musical
talent is a force to be reckoned with.
Check out This Isn’t Disneyland
on YouTube: www.youtube.com/
watch?v=fu800VYgyis or buy the single
on iTunes: https://itunes.apple.com/
ca/album/this-isnt-disneyland-single/
id930259411. For more information on
The Sisters of Invention, or other work
by Tutti, visit www.tutti.org.au
April 2015 — Vol 24/1
Link: People
Chop to it
Head to any agricultural
show in Australia and there’s
always a crowd watching the
woodchopping. Show-goers
young and old love to marvel
at the strength, accuracy and
speed of the competitors, as
they reduce gigantic logs to
kindling in a manner of minutes.
However the excitement grows even
stronger when 29-year-old Nick
Fredriksen enters the ring.
That’s because he’s the only one-arm
amputee competing in woodchopping
in Australia.
“Competing against able-bodied axemen
helps me to become a better axeman
and to maintain my strength,” says Nick,
who regularly competes in events across
Australia and New Zealand.
“Because I have one arm I need to work
twice as hard when I compete against
axemen with two arms. What I lack in
strength I try to make up with accuracy.”
For Nick, who lost his left arm in a hay
bailing accident on the family farm at
age eight, woodchopping is a family
tradition. As a child he was determined
to compete in woodchopping alongside
his father and brother regardless of his
disability, and spent years training to
develop the strength and accuracy
required of the sport.
It’s an investment that appears to
have paid off, with Nick winning his
first ever handicap Standing Event in
Christchurch in 2014, along with the
Novice Woodchopping at the Maleny
Show and the Queensland Axeman’s
Association ‘Over All Novice Points’
trophy. He also racked up a world-first
in the Two Board Tree event, becoming
the first amputee axeman worldwide to
compete in this challenging class, which
sees the axeman climb a tree with the
April 2015 — Vol 24/1
My goal is to become
the fastest arm
amputee axeman in
the Guinness Book of
World Records.
aid of spring boards and chop off a log
at the top.
“I always set out to do my best when
I compete and I aim for continual
improvement,” he says. “My goal is
to promote sporting opportunities for
athletes with a disability, to become
the fastest arm amputee axeman in the
Guinness Book of World Records, and to
gain sponsorship to help me to achieve
my goals.”
Nick is also an accomplished swimmer,
having won five silver medals at the
Australian Swimming Titles and broken
countless national and state records,
and works as a heavy machine operator
with the aid of a prosthetic.
This year Nick plans to compete in
shows throughout Queensland, including
the Brisbane Ekka, and to return to New
Zealand.
linkmagazine 43
Link: Opinion
Is the NDIS
sustainable?
sites have very high levels of participant
satisfaction.
The National Disability Insurance Agency
(NDIA) has the responsibility to manage
the financial sustainability of the NDIS by
adopting an insurance-based approach
informed by actuarial analysis. Two
questions emerge here: firstly, what is
an insurance model and, secondly, why
has such an approach been adopted?
An insurance model is characterised by
the following:
1. A defined benefit
2. A premium
3. Risk pooling
4. A long-term perspective, with an
emphasis on claims management
Dr Sachi Purcal, from the
Macquarie University Centre for
the Health Economy, reflects on
the insurance-based approach
adopted by the National
Disability Insurance Agency
and why the NDIS alone won’t
improve quality of life for people
with disability.
Unlike any disability related program
before it, the National Disability Insurance
Scheme (NDIS) aims for a new way of
funding individualised support for people
with disability that involves more choice
and control and a lifetime approach to
a person's needs.
Bruce Bonyhady, the NDIS Chairman,
has stated the NDIS is laying the
foundations for success through an
approach that champions starting small,
collecting data, confirming what works
and then applying the lessons to the fully
scaled-up scheme. At present the trial
44 linkonline.com.au
5. Dependent on consumer
acceptance.
Loosely, the NDIS has a premium to fund
its costs through its $22 billion funding
envelope. Risks are pooled nationwide
to reduce the impact of disability costs
on Australians.
The NDIA adopts a long-term
perspective, looking to ensure good
outcomes for participants at reasonable
costs. Within the framework of an
appropriate governance structure, it
does this by analysis of longitudinal
actuarial data.
The adoption of an insurance model is
an unusual approach for an entitlements
scheme - management of Medicare
doesn't have such a responsibility. Why,
then, has an insurance model been
adopted for disability service provision?
One reason is its lower cost and broad
acceptance that the traditional rationed
model adopted in the states and
territories is unsustainable, with high
costs and poor outcomes. Indeed, cost
pressures in these systems can push
them into a ‘death spiral’. In contrast,
we have a rich history of the successful
operation of the insurance model in
numerous major personal injury schemes
throughout the country.
Its ultimate success, however, depends
on widespread community acceptance
- community belief in it having delivered
good outcomes for participants at
reasonable cost and better than under
the traditional rationed approach.
However, it is not only the NDIS, which
looks after supports that will help people
with disabilities achieve an ordinary
valued life. Appropriate government
investment in housing, transport, health,
education and the physical environment,
as promised under both the National
Disability Agreement and the National
Disability Strategy, also has to take
place. Such investment is needed so
people with disability can truly participate
and be included in Australian society.
Indeed, the financial sustainability of
the NDIS requires it. Any expectation
that the NDIS can fulfil these roles as
well will send its costs spiralling and
doom it to ultimate failure. It would be a
cruel blow to have hopes raised by the
promise of the NDIS, only to see them
dashed by insufficient follow through in
such infrastructure provision.
The Macquarie University Centre for the
Health Economy (MUCHE) investigates,
analyses and reports on the Health
Economy to provide stakeholders
with reliable, independent and applied
research that can be used to inform
debate and assist decision-making and
policy formulation.
April 2015 — Vol 24/1
THE F3 CORPUS ®
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Emma Melissa Reyes
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linkmagazine 45
Link: Products
Books & publications
My Happy Sad Mummy
(Jo Jo Publishing)
Told through the eyes of a young girl
living with a mother who has a mood
disorder, My Happy Sad Mummy is a
fantastic picture book that explains
to children the impact on a parent
of a major mental illness such as
bipolar disorder. Drawing on her own
experiences as a mum and someone
who has experienced the emotional rollercoaster of mental
illness, author Michelle Vasiliu has created a valuable resource
not only for children, but parents, teachers and mental health
workers. www.classic-jojo.com
Accessible Melbourne
(Lonely Planet)
Discover Melbourne’s best wheelchairfriendly restaurants and shops, get active
Accessible
Melbourne
with accessible sports, and enjoy spectacular
scenery, food and wine along the Great
Ocean Road. It includes user reviews and
insider tips from a wide range of travellers to
ensure those with mobility, hearing or vision
impairment get the most out of a Melbourne
holiday. Download your preferred version of this free e-book
at www.lonelyplanet.com/accessible-melbourne
Day trips
Outdoor
experiences
Transport
tips
Evacuation of People with
Disability
(Self-published)
Evacuating people with disability, safely and
with suitable equipment, is just as important
as ensuring buildings are accessible,
according to disability access consultant
Lee Wilson. The accessible building specialist
has put together a 154-page guide on the
topic, complete with templates for personal
and group emergency evacuation plans.
Evacuation of People with Disability & Emergent Limitations:
Considerations for Safer Buildings and Efficient Evacuations is
available as a free PDF download from www.leewilson.com.
au. Accessible formats will be available soon.
46 linkonline.com.au
Medikidz Explain Spinal
Cord Injuries
The SpineCare Foundation, in collaboration
with Medikidz, has launched a world-first
educational comic book designed to help
Australian healthcare professionals explain
complex medical information about spinal
cord injuries to children. Written by the
Medikidz doctors and reviewed by Australian
paediatric spinal cord injury specialists from
leading Sydney hospitals, the book features three real Australian
children who live with spinal conditions. A ‘Meditotz Explain
Spinal Cord Injuries’ version is also available. The free books
can be downloaded at www.northcott.com.au/spinecare or
in hard copy by emailing deanna.mooney@northcott.com.au
Rebel Yell Updated
(Jetlaunch)
Rebel Yell UPDATED is a classic revisited. True
to the original 2003 publication, it remains
witty and entertaining, beautifully simple, and
humble in its message delivery. Author Johnny
Mackay says the book is ideal for people
exploring the concepts of self-reflection
and who are increasingly challenged by the
question ‘is there more to life?’. Included
in the updated version are extensions which relate to the
history of the original publication and an introduction as to the
spiritual unfolding with which the journey began. Available from
www.amazon.com or www.johnnymackay.moonfruit.com
Love is All There Is
(Self-published)
Author Jewels Smith has written a touching
and poignant tribute to her daughter, Sienna,
who passed away recently at the age of 12.
Described as ‘Angel Girl’, Jewels reflects on
her daughter’s sometimes difficult journey
and the things she learned from her brave
daughter as she faced formidable challenges,
including the importance of love, compassion,
caring and kindness. Available from www.facebook.com/Lov
eisallthereisSiennastory/?ref=bookmarks
April 2015 — Vol 24/1
7 May 2015
Royal International Convention Centre,
RNA Showgrounds Brisbane
13-14 May 2015
Rosehill Racecourse, Sydney
On display will be the latest in aids, equipment and assistive technology, as well as
options for mobility, services and lifestyles. The event is open to visitors of all ages,
including those with a disability and their family, friends and carers.
FREE CLINICAL PROGRAM • FREE TO ATTEND
April 2015 — Vol 24/1
For more information
phone 1300 789 845 or visit
www.atsaindependentlivingexpo.com.au
linkmagazine 47
We have a simple philosophy at Orana…
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With a diverse range of employment
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To find out more about Orana and how
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APRIL 2015
Grey Matters National Conference
1 April,Hindmarsh, SA
www.connections.edu.au/news/
Launch of Hearing Voices
Queensland network
8 and 27 April, various Qld locations
www.nds.org.au/events/1424386903
MS Melbourne Cycle
(Annual multiple sclerosis fundraiser)
19 April; Melbourne
www.msmelbournecycle.org.au/
about/default.asp
JUNE 2015
The Wings for Life World Run
(Spinal Cord Research)
3 May Melbourne
www.wingsforlifeworldrun.com/au/
en/melbourne/
National Tenpin Bowling
Championship for Persons with a
Disability
3–13 June, Brisbane, Qld
www.tenpin.org.au
ATSA Independent Living Expo
7 May, Brisbane, Qld
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com.au
Steam Rally Echuca
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6–7 June, Echuca, Vic
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NDS Disability at Work Conference
18–19 May, Melbourne, Vic
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Please subscribe me to the printed version of Link Disability Magazine
Link: Opinion
Sisyphus and now
for all eternity to roll a huge boulder up
a mountain. Just as he reached the top,
the rock would roll away to the bottom
and he would have to begin anew.
In so many ways life with a disability is a
constant Sisyphean challenge. Just as
things appear to be looking good some
part of us breaks down and needs repair
or a new part requires money spent on
it or the wheelchair has a double flat.
Link’s resident columnist Peter
Coulter likens the challenges of
living with a disability to those
faced in Greek Mythology.
I think that many disabled people would
sympathise with poor old Sisyphus.
He somehow displeased the Gods of
Ancient Greece and was condemned
I now read in New Scientist magazine
an article titled ‘How Long is Now?’
It appears a metaphysical question
but neuroscientists and psychologists
believe they now have an answer.
Using the argument that we live in the
present, here and now, they argue we
must necessarily experience time as a
series of ‘nows’. But how long is now?
For the brain to be able to distinguish
events, recognise them and store them
as memories, without them becoming
indistinguishable from one another, they
must be separated in time.
In the case of sound this must be in
the order of two milliseconds but vision
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requires some tens of milliseconds. For
the brain not to become overwhelmed
this creates a timeframe or reference
and we live in a series of nows, each of
which seems to have a duration of two
to three seconds.
Sisyphus had a ‘how long is now’
revelation or moment at the bottom of
his mountain and again at the top, these
two points being his epiphany - or start
and end. Given my disability, the now
moments are constant so long as my
eyes are open. I have a severe visual
disability, which limits my field of vision
meaning that I cannot see both sides of
an object at once. This makes negotiating
any traffic hazardous and precludes the
privilege of driving a car. I am conscious
at every moment of the necessity of
calculating my position in space relative
to both animate and inanimate objects.
This is an innate behaviour for most
people but, for me, is an intellectual
exercise to be engaged 100 per cent of
the time and is very taxing. It makes my
‘now’ moments fractions of a second all
day, every day.
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April 2015 — Vol 24/1
breakthroughs
Fruit linked to depression
Women who eat fewer than two serves
of fruit a day face a greater risk of
developing depression, according to
research conducted at the University
of Queensland.
Professor Gita Mishra, from the
university’s School of Population Health,
said the findings of a six-year study
of more than 6000 Australian women
revealed a clear link between fruit
consumption and the development of
depressive symptoms.
“We found that women who ate at least
two servings of fruit a day were less
likely to suffer from depression than
women who ate fewer servings, even
after taking into account other factors
such as smoking, alcohol, body mass
index, physical activity, marital status
and education,” Professor Mishra said.
“We also found that eating two or
more servings of fruit a day protected
women from developing depression in
the future.”
Professor Mishra said researchers had
not found a link between vegetable
intake and depression.
She said the findings, published in the
European Journal of Clinical Nutrition,
highlighted the importance of a diet
high in fruit to avoid the development
of depression in middle age.
Australian boy first in world to receive
artificial pancreas
Australian boy Xavier Hames, 4, has
become the first patient in the world to
receive breakthrough technology to help
manage type 1 diabetes.
The Juvenile Diabetes Research
Foundation (JDRF) funded the trial at
Perth’s Princess Margaret Hospital for
Children (PMH), in conjunction with a
network of hospitals across Australia.
Under the trial, an insulin pump system
mimics the biological function of the
pancreas to predict low glucose levels
and stop insulin delivery. This avoids the
serious consequences of low glucose
such as coma, seizure and potential
death.
“This is an instrumental development in
the management of type 1 diabetes,”
said Professor Tim Jones, from PMH.
“It’s the first time we’ve been able to
offer patients a management tool that
can prevent hypoglycaemia.
“The majority of hypoglycaemic attacks
occur at night when a person is asleep
and they might not be able to react
April 2015 — Vol 24/1
or recognise the attack. This device
can predict hypoglycaemia before it
happens and stop insulin delivery before
a predicted event.”
Xavier was diagnosed with diabetes
when he was 22 months. He has been
receiving regular treatment at PMH since
his diagnosis and will be the first child,
outside of the clinical trials, to use the
new device.
Xavier’s mother Naomi said that the
pump system was a breakthrough in
Xavier’s care and for others suffering
with the disease worldwide.
“Having the pump gives us the
reassurance that Xavier is safe when
we are all asleep at night, and during
the day,” she said. “It is also waterproof
meaning that he can enjoy water sports
and activities as much as his friends
and family. We are so delighted to be
part of this milestone event and to be
receiving the very best treatment for our
little boy.”
linkmagazine 51
Fun run
More than 1000 people gathered at Albert Park Lake in Melbourne on February 15 for
the annual Muscular Dystrophy Association ‘Run for Strength’. The event raises funds
for MDA research programs and increases awareness of this life-threatening condition.
3
1. Seven News Melbourne journalist Kristy Mayr
and Muscular Dystrophy Australia executive
director Boris Struk.
2. Ozi Akyildiz and family, one of the founders of
the event.
1
2
Disability
support
conference
3. The event attracted a huge crowd.
Representatives from across Queensland attended
the inaugural Disability Support Workers (DSW)
Conference in Brisbane on February 24 and 25. Local
and international speakers, including UK disability
expert Mary Johnson, addressed delegates on how
to prepare for the launch of the NDIS in Queensland
in mid-2016.
3
1. Mary Johnson, Disability Practitioner from
the UK, presented at the conference.
1
52 linkonline.com.au
2
2. Staff from Multicap and CPL welcoming
delegates.
3. Some of the delegates at the conference.
April 2015 — Vol 24/1
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