Nathan Charles - Link Disability Magazine

Transcription

August 2014 | Volume 23 Issue 3
Nathan
Charles
The Wallabies star
on living with
cystic fibrosis
Class clown
Actor Verne Troyer talks
family, movies and why
bullying is never ok
Happy babies
Paralympian Karni Liddell
on why happy is good
Why me?
Is it ok to grieve having a
child with disability?
A NO S TR I N G S AT TA CH E D T H E AT RE O F D I S A B I L I T Y P RO D U C T I O N
SONS & MOTHERS
BY A L IR IO Z AVA R C E
2014 NATIONAL TOUR
August to October
“Eloquent and tender...
beautifully crafted”

The Advertiser
A love letter to mothers
Six sons living with disabilities tell the stories
of their lives and the stumbles and triumphs
they encountered along the way
more information: performinglines.org.au
210x285mmAd_Sons&Mothers.indd 1
24/07/2014 9:28 pm
inside
Editorial
Editor
Rebecca Somerfield
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Cover story
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Wallabies star Nathan
Charles chats with Link
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Your letters
Dignity for Disability MLC Kelly
Vincent’s column
35 36 Chrissie Amphlett’s legacy
39 Research into the housing
needs of people with intellectual
disability
6 News
9 Products & Services
40 10 Meet movie star Verne Troyer
42 Learn about a campaign to
12 encourage the AFL to introduce
43 a disability round
Copyright 2014. Please contact
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16 Incontinence and personal care
feature
26
Psychologist Silvia Belo-Tomic
on grieving for children with
disability
28 Paralympian Karni Liddell talks
attitudes to disability
34 Visit Australia’s first shopping
centre ‘quiet room’
CD formats available
Link is distributed via subscription
or www.linkonline.com.au
44 45 NDIS stories from Geelong’s
Lead Barwon project
Visit an innovative residential
care facility in Israel
Breakthroughs
Meet a social group for adults
with Aspergers
Subscribe to Link Magazine
Peter Coulter considers the
effects of serious crimes
46 What's On
47 Books
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from the editor
It’s been a big two months
in the disability sector with
proposed changes to the
Disability Support Pension
dominating the news. We
love to hear your views on
issues such as this so please
keep sending in letters and
contributions – or interact with
us on Facebook or Twitter.
LINK loves…
No Strings Attached
Change is also afoot at Link,
as we bid farewell to our major
sponsor, Telstra, who has
supported the magazine since
1995. Telstra’s sponsorship was
much appreciated by all at Link,
and was crucial to funding www.linkonline.com.au, enabling
readers to access the magazine online for free.
As an independent, non-profit publication Link relies on
sponsorship and advertising revenue - without it, we can’t
exist. That’s why we’re on the look-out for new supporters
to share our journey. If your business or organisation
would like to develop a partnership with Australia’s leading
disability magazine – and to link with our readership of
nearly 20,000 – then we’d love to hear from you.
There’s lots of great reading in this edition including an
interview with Hollywood actor Verne Troyer, who played the
infamous ‘Mini Me’ character in the Austin Powers movies,
and a story on why the AFL should introduce a Disability
Round. We also catch up with Paralympian and motivational
speaker Karni Liddell, who shares her thought-provoking views
on why society is obsessed with ‘healthy babies’, and hear
from psychologist and mother of two children with disability
Silvia Belo-Tomic, who asks the controversial question of
whether it’s ok to grieve having a child with disability.
Finally, have you checked out the Link Disability Directory
yet? From mobility aids and home assistance products to
employment services and supported travel, it’s a onestop shop for all things disability-related. And if you’re a
business who provides a service or product for people with
disability, then why not come onboard as an advertiser.
Visit www.linkonline.com.au for details.
Until next time.
Rebecca Somerfield, Link editor
2
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No Strings Attached Theatre of Disability
has announced a national tour of its 2012
Adelaide Fringe hit, Sons & Mother’s.
Written and directed by artistic associate Alirio Zavarce,
in collaboration with the performers, Sons & Mothers is
a humorous and poignant look into the lives of six men
and their relationships with their mothers. Their love
stories are made all the more potent because of the
disabilities the men live with and their humbling takes on
discriminations they’ve faced.
No Strings Attached artistic director PJ Rose says the
play took seven years to create – five to gestate, two
years to develop, three weeks to rehearse and two
weeks to perform.
“In those brief two weeks, Sons & Mothers became the
buzz of the 2012 Adelaide Fringe. Five-star reviews and
great word of mouth led to sold out houses and top
Fringe Awards. A magic energy continues to animate
this unusual show that appeals to audiences of all ages.
As one reviewer put it, this show appeals to anyone
who’s ever had a mother, and we are thrilled that
audiences all over Australia will get to see it.”
The tour begins in Darwin on August 14 and 15, before
travelling to regional venues in all states of Australia. For
dates and venues visit www.nostringsattached.org.au
Share your views and read about all things disabilityrelated at facebook.com/linkdisabilitymagazine.
August 2014 — Vol 23/3
y-
linkmagazine
3
letters to Link
Letter of the Issue: A boot load of flowers
I'm standing in the middle of my
chrysanthemum patch when I suddenly
decide that it has to be done. I call my
friend Julie for a chat. "We'll probably
both end up in tears," I say. "But
there's something I'd like you to do."
Julie's daughter Erin passed away
on the 18th of September, 2013. Erin
was only 31, had special needs and
required very special care. At her
funeral I was amazed by the number
of lives Erin had touched. And I
was overwhelmed by the number of
people who had supported Erin and
her parents, Julie and Simon, in so
many ways.
Strain on finances
I am writing to dispel some of the
myths about the government's budget
changes for people with disabilities.
I have had MS for 24 years. Even though
I had to retire from full-time work 17
years ago I have constantly tried to keep
up casual and voluntary work. This has
been the only way I can get a HealthCare Card by maintaining a Mobility
Allowance with Centrelink – because
I am not on a federal government
disability pension but rather on a state
government superannuation pension!
Because I am only in my mid-50s
(and even though I am constantly
in a wheelchair and in need of high
care) I must work as long as possible;
because once I stop I will no longer
have a Health Card until I am 65 or 70.
Kevin Andrews, in your push to save
your budget and ‘simplify’ funding
sources for people with disabilities
and to publicise punishing the minority
who abuse the system, you have
left me with even fewer options for
maintaining my family’s finances.
And now I find that I will be moved
into a precursor of the NDIS. This will
change my present care arrangements,
which are heavily subsidised by the
government, to a "bucket of money"
which unfortunately has many holes.
4
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Julie spoke glowingly of the fantastic
assistance that the carers had
provided for Erin and just how much
that Simon and her had appreciated
their help. I decided that I wanted
to help Julie show her appreciation
to them and mentally earmarked
armfuls of the chrysanthemums I
grow to all of those she had thanked.
In the months following the funeral
it never seemed quite the right time
to call Julie and offer her flowers. I
really wanted to be part of thanking
those wonderful carers but was it my
place I wondered? As the flowers
grew so did my uncertainty. Finally,
This will leave me with a considerable
amount more to pay for the care I need
and yet more drain on our finances –
not to mention the increasing pressures
on my wife while working full-time.
Bruce Mumford, Moss Vale, NSW
Gender blind
The National Disability Strategy (NDS)
is the national policy framework to
guide Australian governments to
meet their obligations under the UN
Convention on the Rights of Persons
with Disabilities (CRPD). The NDS is
a ten-year Strategy that was formally
endorsed by the Council of Australian
Governments (COAG) in 2011. Under
the NDS, a high-level Progress Report
will be submitted to the COAG every
two years, the first due in late 2014.
This Submission from Women With
Disabilities Australia (WWDA) to the
COAG, assesses whether, if and how
the NDS is promoting, protecting,
respecting and fulfilling the human
rights of women and girls with
disabilities in Australia. This submission
is critically important given that to date,
despite Australia’s international human
rights obligations in relation to gender
equality, all aspects of the NDS are
un-gendered. WWDA’s submission
sends a strong and urgent message
to all Governments that public policy
one beautiful Autumn day, when
the flowers were just beginning to
bloom, I called Julie. I really wanted
to thank Erin's carers and I needed
Julie's help to do it.
To all the wonderful careers out there
I offer you my heartfelt thanks. For
the assistance you provide every
single day. For the selfless work you
do, for all your love and patience. If it
was practical, I would bring you all a
boot load of my flowers. .
Wayne Jeffery, Wonga Park, VIC
which treats people with disabilities as
a homogenous group only serves to
perpetuate the stereotype of people
with disabilities as asexual, genderless
human beings, and gives rise to a
policy, program and service vacuum
whereby the human rights of women
and girls with disabilities remain
violated, denied, ignored and trivialized.
WWDA’s submission demonstrates
the vital importance of gender
as a central consideration in the
development of legislation, policy and
programs to advance gender equality
and to promote the rights of women
and girls with disabilities.
WWDA’s submission can be
downloaded from wwda.org.au/papers/
subs/subs2011/
Carolyn Frohmader, Executive
Director, WWDA
Send your letter to the editor:
Link, Inprint Design, 1B Laffer Drive,
Bedford Park SA 5042 or email it to
[email protected]
Please include your postal address (not
for publication).
The best letter wins $50
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.
link | opinion
A year of
the NDIS
Dignity for Disability MLC Kelly Vincent
comments on a year of the NDIS.
Here in South Australia, we are 12
months into the National Disability
Insurance Scheme, a reform of
disability services that was fated to
be a once in a lifetime reform to the
ailing, disorganised and underfunded
disability sector. We’ve commenced
with zero to five year olds, and as
of July 1, we’re now rolling it out to
include six to 13 year olds.
In other states, regions have been
chosen, such as the Barwon in
Victoria, Hunter Valley in New South
Wales, Perth Hills in Western Australia,
and Barkly in the Northern Territory.
In Tasmania, they’ve chosen young
people aged 15 to 24 years old. In the
ACT, inclusion of all age groups has
just commenced, while in Queensland
governments have opted to wait a few
years before they move into the NDIS.
For those states that have launched, it
has been both exciting and troubling.
Exciting because there was so much
expectation that this would be the
silver bullet, the fix we needed. After
years of consulting people with
disabilities, yet only being offered
broken promises and daily struggles
with government bureaucracy, it was
dearly hoped that the NDIS might
finally be the answer.
In Adelaide, the anticipation was
quickly met with worry, complaint and
concern as many families with young
children with disabilities struggled to
cope with the latest round of forms
and paper work and
assessments and meetings.
In some cases they were
also dealing with the new
shock of a disability diagnosis
in their child, and the process
became overwhelming, and
very disappointing, as they
were granted less servicing
under an NDIS plan than they
had previously been granted by
Disability SA.
How can this happen? The NDIS
was promised to offer more, not less.
The same old issues of insensitive
treatment, continual form filling-out,
communication failures and confusion
have continued to be reported to my
office, out in the disability community,
and via online forums.
So, I have written to Bruce Bonyhady,
the Chair of the NDIS Board, to
express my very serious concerns, and
request a community-led conference.
I know Mr Bonyhday, and believe him
to have the very best intentions for
people with their disabilities and their
family carers – he is the father of two
sons with disability – so has a real
understanding, after all.
We all knew that transitioning such
a clunky system into something
streamlined and fabulous was never
going to be an easy process after
so many years of failed programs,
mismanaged reforms and the diversity
of need in the disability sector. But
that doesn’t mean it’s acceptable
for the same old disability sector
problems to be occurring in our new
NDIS, and the Board and senior
managers of the NDIS must be
mindful of this, and take action.
What we must not do as we further
implement the NDIS, is leave the
structure and management of it
to the so-called ‘experts’. We, the
people with disability, our family,
carers and advocates, are the experts
and we’re tired of being told by socalled professionals what we do and
don’t need in our lives. We want to
have control over our lives, and be
empowered by a plan that an NDIS
brings to us.
All involved in the NDIS need to be
reminded by what is on the front
page of the NDIS website: a new way
of providing community linking and
individualised support for people with
permanent and significant disability,
their families and carers. This is not
what is occurring at the moment, but
we must get back to it.
linkmagazine
5
news
Kokoda Trek challenge aims to get young people
out of aged care
The 7,000 young Australians currently
living in aged care is the inspiration
behind a Gold Coast man’s ambition
to complete four gruelling challenges
in a year.
Terry Phillis will take on the harshness
of the Papua New Guinean jungle
while raising awareness and muchneeded funds for young Aussies with
24/7 care needs by taking part in the
Youngcare Kokoda Trek 2014, from
September 28 to October 10.
The Suncorp Group business
insurance specialist said while he
has not been directly affected by
this situation, he wanted to make
a difference and create choices for
these young people.
“The cause is one that touched me
and therefore I will be taking part in
the Kokoda trek and 2015 Simpson
Desert Challenge, along with this
year’s Gold Coast and Sydney
marathons,” Terry said.
“These pale into insignificance
compared to the challenge our
young disabled Australians
have to deal with while being
in aged care facilities.”
Youngcare CEO Samantha
Kennerley said aged care is
no place for a young person.
“This enormous injustice can be
solved thanks to the support from
inspirational participants like those
taking part in Youngcare’s Kokoda
Trek 2014,” Sam said.
“All the money raised will go towards
providing choice in care and housing
options for young people with high
care needs.
“This includes our new building project
at Wooloowin in Brisbane’s innercity, which is aimed at getting young
people with high care disability needs
out of aged care.”
To support the trekkers visit
www.everydayhero.com.au
Training program gets teens job-ready
A record number of school leavers
with disabilities have signed up to take
part in a training program designed to
get them job ready within two years.
The young people are enrolled in
disability service provider Northcott’s
Casula Transition to Work (TTW)
program, which will help them gain
new qualifications and build their skills
so they can enter the workforce.
Program coordinator Christine O’Neill
said 15 young people are taking part
in 2014, up from five in 2013.
“This high level of demand shows that
young people with disabilities in southwest Sydney are eager to find work
and are willing to do the hard yards in
order to get job ready,” she said.
6
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“We help out in a range of areas
like resume writing, interviewing
techniques, cover letter writing and
travel training so they can get to and
from work independently.”
Nineteen-year-old Wahida Mohseni, who
is vision impaired, is a recent participant
in the program, and has learnt to use a
special computer software program.
“I spend eight hours a week learning
the Jaws program,” she said. “It
means I can use braille to use a
computer and read the screen."
“My goal is to get into inclusive
education because I’m
passionate about educating
people about disability.”
Wahida Mohseni
wants to pursue
in education
a career
Ms Mohseni said TTW has also helped
her learn more independent living skills
and make new friends.
Funded by the NSW Government,
the program is open to any school
leaver with a disability. To find out more
contact program coordinator Christine
O’Neill on (02) 8778 2300 or email
[email protected]
DOES
SOMEBODY
YOU KNOW
HAVE AN
AUTISM
SPECTRUM
DISORDER?
Newly diagnosed? Don’t know where to turn?
Not sure what services are available?
For assistance, support and help navigating your journey
call the Autism SA Infoline on 1300 288 476.
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link | off the shelf
Products & Services
Walking support
Let’s talk
The Firefly Upsee – a standing and walking harness for
children with motor impairment – is the invention of a mother
who wanted a harness support that could improve her son’s
mobility skills. It enables infants and small children to stand
and achieve repetitive walking training with the support
of an adult. The system includes a harness for the child,
which attaches to the system’s adult belt, and speciallyengineered sandals, which allow the parent and child to step
simultaneously, leaving their hands free for play and other
tasks. The UK-based manufacturer, Firefly Friends, ships
direct to Australia via their website. www.fireflyfriends.com
Find out how
to talk to your
teens about
important
issues such as
cyberbullying,
body image
and depression
by checking
out the new
role-play videos
and articles at www.raisingchildren.net.au This free
resource was developed by the Raising Children Network
and New South Wales Kids and Families, with input by
experts in adolescent wellbeing. It’s designed to help
parents and practitioners communicate with teens, in
particular young people with emotional and social health
concerns or a long-term chronic illness. Video scenarios
between parents and teens demonstrate positive ways to
communicate, while expert commentaries highlight good
communication styles that parents can use to broach
tricky issues.
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linkmagazine
9
link | interview
Just
being me
Best known for playing the
role of ‘Mini Me’ in the Austin
Powers film series, actor
Verne Troyer was raised on a
farm in Michigan, USA, before
moving to Texas at the age
of 21. A chance discovery by
director John Hughes kickstarted his movie career and
he moved to Los Angeles.
Marlena Katene caught up
with Verne during his recent
visit to the Gold Coast.
Did you ever encounter bullying
at school or did people treat
you differently due to your hair
hypoplasia dwarfism?
In grade school, there was somebody
that called me the wrong word, called
me Midget – which is the ‘M’ word,
which is not the right word to say. He
was younger than I was and a little
bit taller. I basically jumped up and
punched him in the nose and his nose
started bleeding (laughs). So after that
he never said it again (laughs again).
What would ‘Mini Me’ think of
bullying?
When I was in high school, bullying
was not really that big a deal for me
because we knew each other. But
10 linkonline.com.au
bullying to me overall, no matter where
you are at, is wrong. We need to stand
up, put our foot down, you know, this
isn’t right. We need to stop it.
I picture you being a class clown.
What were you like at school and
what were some of your favorite
subjects?
I was kind of the class clown. I did
some stunts and I would surprise
people like jumping out of a school
trash can (laughs). I wasn’t a big high
school fan but I did like sport. Sport
was my favorite.
I am told ‘grow old is not an option
but growing up is’. You started out
in the industry doing stunts and
kid or animal roles. How did you
get into the industry after coming
from Centreville, Michigan?
I got lucky. I had a friend that had
a call from somebody who was a
producer for a movie; his name was
John Hughes. He is a big producer/
director and they needed a stunt
double for a nine-month old baby
(laughs). I was the only one that was
close enough to be that size and do
the stunts. You know, I’ve done so
much: a lot of costume work, where I
played a panda bear, I played a dog,
played an orangutan, played a baby
gorilla. So I have done a lot of different
things and when Austin Powers came
along it just kind of changed things.
I’m just enjoying it while I can.
Your personal life has sometimes
been thrown around in the media
and we have heard about past
struggles in your life. What is the
worst and best thing about being
Verne Troyer?
You know with media nowadays – the
paparazzi – they throw things out of
proportion. It is not always true and
you can’t always believe what they say.
The best thing about being me is being
able to meet you, being able to meet
everybody. That is like an honour for me.
Your parents were very important
to your upbringing and I have heard
you say they didn't treat you any
different. Can you share with me a
story or two about growing up with
your mum, dad and two siblings?
Yeah, I had an older brother and a
younger sister. They are both average
sized. My parents didn’t treat me any
differently as you said. If it hadn’t have
been for them, I wouldn’t have been
able to succeed like I have. I owe
everything to my parents. If I have a
australian
Credit: Marius Luppino
DiRECtoRy
hero, it’s my mum and dad and I really
appreciate everything they have done for
me. I have so many stories from growing
up on the farm. I had to do everything
that they had to do, my brother and
sister. I had to go in and lay hay down
for the cows and feed them. I got in
the pen with them and the bull actually
charged me, hit me in the chest and
threw me back against the wall. It didn’t
hurt but I got scared so I jumped out
immediately, so everything turned out
fine. You know, I liked the experience of
being around the farm and feeding pigs,
chickens and everything like that.
You were working on a movie with
Heath Ledger during the time he
passed away. Can you share with
us your memory of Heath and tell
us about the tattoo you have on
your hand.
My experience with Heath was once
in a lifetime – it was amazing. He was
so talented and such a giving person.
I feel so lucky to have done a film with
him. I was so glad that we were able to
finish it and have people see the film.
The tattoo that I have (on right hand) in
script art, he wrote it down at the end
of his email and I just got a copy of it. I
just wanted to remember (him) because
he was such a great person and I
cherish the times that I had with him.
ONLINE
Comedy sometimes borders on
offensive or plays on societal
perceptions. How important is it to
maintain a good sense of humour,
to embrace who you are and move
on despite the critics?
I think it is one of the most important
things. You have to be positive with
yourself – if you’re not, no-one else is
going to do that. I don’t worry about
what other people say, because that’s
not me, they don’t know me.
Have there been times in your life
where other people with dwarfism
have criticised what it is you do?
I just do what I want to do, and I
do what I can do and if somebody
doesn’t like it – I really don't care. I
just want to be able to stay positive
and be able to do what I do and meet
so many different people.
Marlena Katene is a budding
entertainment journalist who has
athetoid cerebral palsy and is nonverbal. Watch Marlena’s interview with
Verne Troyer and many others on her
YouTube channel theaacjournalist.
Launching in June!
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linkmagazine 11
link | sport
Footy
fever
Disability advocates
are lobbying the AFL to
introduce a Disability
Round in 2015.
The president of South Australian
political party Dignity for Disability, Mr
Rick Neagle, who submitted a proposal
to the AFL last year, says a Disability
Round would complement the current
Indigenous Round, Mother’s Day Breast
Cancer Week and Anzac Day clash.
"The AFL has a far reaching positive
effect on the wider community and
yet people with disability still tend to
remain forgotten,” Mr Neagle said.
"The AFL has an excellent profile
and established brand in Australian
sport and is the benchmark for
other organisations when it comes
to enhancing community awareness
programs and promoting the rights of
people in marginalised communities.”
Also lobbying the AFL to introduce a
Disability Round is advocacy group
Disability Speaks. Chairman David
Holst says a Disability Round would
do wonders for boosting community
awareness of disability-related issues.
“Disability as an issue is 20 years behind
other mainstream issues,” Mr Holst said.
“If the AFL agrees to the proposal it will
be a massive win for the sector and the
educational benefits will be enormous.
“Our campaign has won the support
of South Australian Premier Jay
Weatherill, and he has written to the
CEO of the AFL, Gillon McLachlan, to
champion the idea.”
The head of the National Disability
Insurance Agency (NDIA), Mr Bruce
Bonyhady, is also in support of an AFL
Disability Round.
“Footy provides a wonderful
commonality of interest and purpose
and reminds us that, while there
are deep club rivalries and fierce
contests, our similarities outweigh our
differences,” Mr Bonyhady said.
“Australian Rules Football is a powerful
force for inclusion, and a Disability
Round would formalise and expand the
AFL's role as leaders in social inclusion.
It will also be a first for a national sporting
competition and add significantly to the
AFL's brand and reputation.”
At time of writing the AFL told Link
that it had received a formal request
from a number of groups to include a
Disability Round in 2015, but was yet
to make a decision.
Something to crow about
Adelaide Football Club outgoing chief executive Steven Trigg said the
Crows support the push for a Disability Recognition Round.
"Themed rounds have become an important part of the AFL fixture, helping
to raise awareness of a number of initiatives and causes," Mr Trigg said.
"Football can be powerful in bringing about positive change, and this could
be another example, where the game can positively change the perception
of people with a disability in the community."
The club already has a track-record in supporting people with disability,
having employed Jacob Milbank, who has Down syndrome, as Football
Services Assistant since 2010.
Jacob Milbank with Crows player Ben Rutten
Jacob, who secured his employment at the Crows through disability services
company Barkuma, works in the administration and football departments,
helping to set up training drills and taking water bottles to players.
link | letters
linkmagazine 13
link | sport
Nathan Charles doesn’t want to be treated
differently just because he has cystic fibrosis. The
25-year-old rugby union player didn’t even tell his
team-mates about his condition until a few years
ago, choosing instead to be judged on his merits.
In June he debuted with the Wallabies, describing
his first match for Australia “as a dream come
true”. Link caught up with Nathan to chat rugby
and his latest role as national ambassador for
Cystic Fibrosis Australia.
spring tours. These are something that I would absolutely
love to be a part of but I have to earn my spot again.
Congratulations on making your debut for Australia. How
did you feel when you got the call saying you had been
chosen for the Wallabies squad? It was an exhilarating
feeling, I actually didn't believe it. It was really nice to know
where I finally stood, whether I made the squad or not. It was
also mixed emotions, because as excited as I was to get
picked I still had two games with the Western Force to get
through and try to win before we went into camp!
You were diagnosed with cystic fibrosis at just three
months old and took up rugby when you were five.
What attracted you to the sport and did your parents
or doctors try to persuade you against the idea, given
your cystic fibrosis? My brother, dad and uncle all played
rugby and we are a big sporting family. I just love it and have
been around it since I was very young! I have never been
told I can't do anything because of cystic fibrosis. It's not an
excuse for me.
And what about the first time you lined up with the
Wallabies at Etihad Stadium to sing the national anthem
– can you describe what this was like? It was a dream
come true, to be wearing the gold jersey of the Wallabies,
arm in arm with the best players in Australia hammering out
our national anthem. It was a rush and something that I will
never forget, it was also great to know my family and best
friends were in the crowd.
What's next in terms of rugby? So now I go back and
finish the Super Rugby season off with the Western Force.
Once the season is finished the Wallabies squad gets picked
again and then there are the Four Nations, Bledisloe and
You are originally from Sydney but your Super Rugby
team – the Western Force – is based in Perth. Is rugby
popular in the west? AFL is definitely the sport of choice in
Perth but rugby is gaining some momentum. It is nice being
in a city like Perth as the supporters here just love sport
and they are very loyal fans, and as a team we aren't under
the spotlight as much as the AFL teams.
When did you know that you wanted to make a career
out of rugby? I always wanted to do it for a living because
I love it so much. I don't know if there was a defining
moment, it's always what I wanted to do.
You’ve said that you didn’t want the fact you had
cystic fibrosis to affect your rugby or the way you were
treated by peers and, as such, kept this private until
a few years ago. What made you decide to go public
and what was the reaction of your coach and fellow
players? The fact that I could possibly raise awareness
about the condition and because I felt that I had made a
career in professional rugby on my own accord. Some of
my close mates already knew but a lot of guys were very
surprised, but they were all amazing and so supportive. The
rugby community is an amazing place.
Is your medication regime pretty standard for someone
with cystic fibrosis? I take medications according to what
infections that I have, every patient is different as to how they
are affected by cystic fibrosis, but I definitely think that the
exercise helps me significantly.
On your website you say that “you just want to be seen
as another bloke on the field doing his best”. How do
we encourage society in general to see people with
disability as individuals, rather than in the context of
their condition? It is a difficult task because there will
always be a stigma attached. I guess when I play rugby I
just want to be judged as a rugby player, I want to make it
to the top level on my own rather than being a sympathy
case because I'm not about that at all.
Do you see yourself as a role model for disability within
rugby and sport in general? I don't, but I guess this is a
role I have been thrown into and if I can be a positive role
model for people then I am really stoked about that. But I
just see myself as a normal bloke trying to do his best.
What advice would you give to young people (and their
parents) with chronic illness and/or disability? To keep
positive. Knowledge is power and exercise is the best
medicine, both physically and mentally.
Tell me about your work as an ambassador for Cystic
Fibrosis Australia. I'm currently the national ambassador
for CFA. I do a lot of work creating awareness, whether it is
speaking at corporate functions, golf days or through social
media. The biggest issue is the profile of cystic fibrosis, not
many people know about the disease and how it affects
people. Hopefully this way I can help put it on the map
and one day achieve our goal of lives unaffected by cystic
fibrosis. www.nathancharles.com.au
Catch the Wallabies in action on August 16 in Sydney
when they take on the All Blacks as part of the Castrol EDGE
Rugby Championships. For the full schedule visit
www.rugby.com.au/wallabies/GameDay/2014Fixtures.aspx
linkmagazine 15
FEATURE:
Incontinence and
personal care
A caring hand
In 2010 Martin Heng was hit by a car, leaving
him a C4/5 quadriplegic. Managing his personal
care was just one of the challenges he had to
overcome. Martin shares his story with Link.
When you are admitted to hospital, you check your dignity
at the door – or so the adage goes. In my case, having
sustained a spinal cord injury (SCI), this was particularly
true. When people see quadriplegics and paraplegics, they
see people who have lost function in their limbs. What
the vast majority of people don’t appreciate about SCI is
that the body’s control over autonomic functions is also
seriously compromised or lost altogether. There are so many
mechanisms we all take for granted until their functionality
is gone or reduced. With an SCI, the main autonomic
functions that are affected are body temperature regulation,
sexual function and continence. Although impaired mobility
is the most obvious effect of an SCI, bladder and bowel
management is equally important when considering
independence, inconvenience and outright danger.
“It’s important that you and the carer be
comfortable in each other’s company, but
it’s also important that they be accepted
by other members of the family.”
Obviously, reliance on another person for assistance with
showering, dressing and the most private of bodily functions
is difficult to come to terms with. However, when you are
completely paralysed, as I was when I first had my accident,
you have no choice but to put yourself in the hands of nurses
and personal care assistants (PCAs). I had always been
somewhat shy about being naked in front of other people,
but this is something that I had to get over pretty quickly! It
helped, of course, being in the hands of professionals and I
soon learned to appreciate the wonderful job that nurses and
PCAs do in looking after patients.
I spent almost a year in hospital and rehab, during which
time the focus was not only on improving my motor skills,
but also on how to cope with life in general with a disability.
While there are many aspects of life that can go on almost
the same as for an able-bodied person, the need for personal
care for most people with an SCI continues and although this
is not an overt focus of the rehabilitation process, developing
relationships with personal carers is undoubtedly something
you learn along the way. Nurses are busy, their workloads are
heavy and, even in a rehab environment, they are often called
upon to deal with urgent matters. Even so, when you spend
as long as I did in rehab, you get to know the nurses pretty
well and the relationships you form go beyond that of merely
patient to health care professional.
When you leave hospital, things change again. Carers are
normally organised through an agency, which puts a team
together to meet your care needs, maintains a roster and
ensures there is back up when needed. Predominantly
women, carers generally fall into two categories: professional
carers who often have a nursing background and/or a
qualification in disability care; and students, often in an allied
health field, e.g. nursing, physiotherapy, occupational therapy
and so on. Each to their own, but this suits me very well –
I’m much more comfortable with female than male carers
and I think it’s great that most have some sort of connection
to or qualification in the field. What is less great is the pitiful
wages that these people earn considering the value of the
work they do to those for whom they do it.
Choosing the right carers and developing relationships with
them are vital. These are people who not only assist you in
the most intimate of daily tasks and bodily functions, they are
also sharing your family’s private space. In my case, as with
many others in my situation, a carer is there when I wake up
and when I go to sleep. Of course, it’s most important that
you and the carer be comfortable in each other’s company,
doing the things that have to be done, but it’s also important
that they be accepted by other members of the family.
When new carers are introduced to the team, the care
manager starts by listing all their qualifications and
experience. While I’m sure agencies find this important, to
me these are far less relevant than the personal connection
– some of my favourite carers had no experience at all
before starting with me. While experience does count
for something, everybody’s routine is different and it will
always take a few shifts before carers learn not only the
routine, but also how you like things done. Patience and
communication on both sides, but particularly on the part of
the client, are paramount.
I started by implying that losing your independence meant
losing your dignity and that is true to a certain extent in
hospital. However, my experience with carers outside the
hospital environment has been different. They are providing
a service and you are their client, but it goes further than
that in most cases. Spending so much time together on
such a regular basis, it is inevitable that a bond of mutual
respect and even affection develops. It’s also true that,
because of my accident, I have come into contact with
people from different demographics – in terms of both age
groups and social background – and this is something that
I have come to value. So I’ll finish with another adage: when
one door closes another opens.
Strength from
within
Pilates is great for improving your body’s
core strength, but did you know it can
help with incontinence? President of the
Pilates Alliance of Australasia and trained
physiotherapist Jenni Guest tells us more.
Pilates is a form of exercise that focuses on the
coordinated contraction of the inner core. The core is
comprised of the deepest of the four abdominal layers,
the Transverse Abdominus, the diaphragm and the
Pelvic Floor Group of muscles. When these groups
contract in unison, stability is given to the spine, pelvis
and hip joints.
Pilates can be performed on traditional equipment
or on a mat and can range from a choreographed
class to a series of exercises you do at home. It’s
suitable for people of all ages and abilities, however it’s
important to be instructed by a qualified practitioner.
Pilates can be helpful in treating incontinence and
we can work to improve the strength, endurance
and control of the pelvic floor muscles, preventing
leakage. You may have heard about the ‘contract
and hold’ exercise that we should do 20-30 times
per day. This is helpful, but to be more accurate, one
should consider the coordinated contraction of the
core group. When this is perfected, there is no chance
of inadvertently bearing down through the pelvic floor
rather than drawing up.
For people with disability, Pilates-style exercises can
improve core strength, providing greater control of
body biomechanics, improved agility, coordination and
stability. This can assist with daily living, transferring
from wheelchairs, walking with aides and providing
greater independence.
For the carer, where manual handling is required,
Pilates improves the muscular protection of the spine
and pelvis, providing a stronger structure for lifting and
transferring your client.
linkmagazine 17
FEATURE:
Incontinence and
personal care
Dealing with
incontinence
Coordinator of the National Continence Helpline, Stephen Marburg
The Continence Foundation of
Australia is the peak national
body working to improve the
quality of life of all Australians
affected by incontinence.
They also run the National
Continence Helpline. Here they
share their top tips for personal
care management with Link.
An important first step towards
bladder and bowel management for
someone with a disability is finding the
most appropriate health professional.
This advice comes from the Continence
Foundation of Australia’s Stephen
Marburg, who coordinates the National
Continence Helpline (1800 33 00 66),
a free and confidential service staffed
by continence nurse advisors five days
per week.
Mr Marburg said the need for practical
information about dealing with the
hands-on, day-to-day management
of incontinence was common among
callers to the Helpline.
There was rarely a one-size-fits-all
approach to managing personal
care, he said, and continence nurses
were ideally placed to assess each
person’s circumstances, such
as body shape, mobility, manual
dexterity and carer support.
Mr Marburg said that, as well as offering
practical advice, the Helpline advisors
could provide the contact details of
the caller’s closest, most appropriate
continence health professional.
“Keeping the bladder
and bowel as healthy
as possible is critical
for avoiding accidents.”
Mr Marburg offers these practical
tips around the more common issues
associated with disability and personal
care. He also recommends the free
resource, 'Help for people who care
for someone with bladder or bowel
problems', available upon request
from the Continence Foundation.
Basic bladder and bowel health
Keeping the bladder and bowel as
healthy as possible is critical for
avoiding accidents. The best way to
maintain bladder and bowel health
is to drink 1.5 to 2 litres of fluid a
day, eat a balanced diet that includes
plenty of fibre-rich foods, exercise
daily where practical, and get into a
regular bowel-emptying regime.
Learning the bowel’s natural rhythm is
essential for regular bowel movements,
which, once achieved, greatly minimise
the risk of accidents. The best time to
empty the bowel is when the gastro
colic reflex is felt. This is a mass
movement of contents through the
bowel that takes place between five
and 20 minutes after eating – usually
after breakfast. By going as soon as
the urge is felt, a good bowel action is
more likely to occur, and the chances
of becoming constipated – which can
be the cause of diarrhoea-like faecal
overflow – is significantly reduced.
For people with neurological disorders
who cannot feel the gastro colic
reflex, suppositories or enemas are
needed to stimulate bowel movement.
Severe cases require attention by a
continence professional.
Products
There are several useful continence
products on the market. Again,
factors such as manual dexterity,
level of disability, body shape and
size, and carer accessibility need
consideration. A continence nurse or
physiotherapist can provide guidance
about the most appropriate products
on a case by case basis.
Funding
The Australian Government’s
Continence Aids Payment Scheme
(CAPS) provides an annual subsidy
of up to $533.50 for someone with
permanent or severe incontinence to
help pay for continence aid products.
Forms can be obtained from
bladderbowel.gov.au or by
contacting the National Continence
Helpline (1800 33 00 66). For help
determining eligibility speak to one
of the continence nurse advisors on
the Helpline.
Going out
It’s important to know where the
closest toilets are when you go
out. The National Public Toilet Map
provides the details and locations
of more than 16,000 public and
private toilets around the country. It is
available online (https://toiletmap.gov.
au/), as an iphone app or on mobile
phones with internet browsers, and
includes information such as opening
hours, change room facilities and
disability access.
www.continence.org.au
• 4.8 million people in Australia
are believed to be living with
some degree of incontinence
– 21% of the population.
Source: www.continence.org.au/
pages/what-is-incontinence.html
• Research suggests
that many people with
incontinence don't go out
as often as they would like
due to their incontinence,
restricting employment and
social lives.
• In 2008/09 the estimated
cost of incontinence was
$1.6 billion.
Source: Incontinence in Australia
report, Australian Institute of Health
and Welfare.
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linkmagazine 19
FEATURE:
Incontinence and
personal care
A South Australian charity is demystifying stoma
management for children.
Teaching children how to manage
their personal care in a fun, nonthreatening way is the aim of
OstomySA’s new puppet program.
As part of the initiative children who
are registered with the service receive
a stoma puppet named ‘Gastronaut’,
whose mission is to help them and
the people around them better
understand their stoma.
“The puppets have a stoma and allow
the children to ‘practice’ on the
puppet so that they become familiar
with how to ultimately self-manage
their stoma,” says Ruth Horne from
OstomySA. “They cost $30 each and
are funded solely by donations.”
A stoma is an opening in the abdomen
through which bodily waste from the
bowel or bladder is evacuated. They
may result from injury, disability or
surgery due to chronic disease.
“The program also aims to dispel
the myth that having a stoma is not
exclusive to the elderly,” says Ruth.
Kelly and her Gastronaut puppet
“Many of our members are infants or
young people who’ve had issues with
genetic problems or birth defects or
may have suffered from Crohns or
ulcerative colitis.”
OstomySA also run parent support
meetings three times a year in May,
August and November, allowing
the parents of child ostomates
to come together to discuss their
unique situations. The meetings are
attended by a specialist nurse and
representatives from the various
stoma appliance providers.
Formed in 1962 OstomySA (formerly
Colostomy Association of SA Inc)
provides personal support, care,
information and encouragement.
The non-profit organisation is also
responsible for the supply of monthly
ostomy appliances, more commonly
known as colostomy or ileostomy
bags, to some 2,000 members
funded under Medicare.
“We also have 40 volunteers who assist
in a number of capacities such as
Gabby and her Gastronaut puppet
contacting new ostomates, packing
parcels for postal deliveries and assisting
members who choose to collect their
monthly supplies,” said Ruth.
More information: (08) 8235 2727
Online resource
connects continence
professionals
Continence Foundation of Australia chief executive Barry Cahill
Health professionals seeking
information about best
practice in continence health
management can now go to
one central online location
– the Australian Continence
Exchange (ACE).
ACE (continencexchange.org.au) is the
Continence Foundation of Australia’s
online tool for health professionals,
with resources and information
from a wide range of organisations
consolidated into one location.
Health professionals can also
improve their professional
development through educational
opportunities and by sharing ideas
via the online forum.
ACE also provides users with
the latest research reports and
clinical guidelines, the consumer
information library, product
supplier directories, expert video
presentations and information about
continence subsidy schemes.
“ACE has done all the hard work for
health professionals by grouping
together valuable continence
resources and providing a platform
for professional discussion,” said
Continence Foundation of Australia
chief executive Barry Cahill.
The site also helps strengthen
professional networks and provides
a list of news and events, as well as
education opportunities.
“Health professionals can be alerted
to professional development
opportunities, connect with other
clinicians to chat about continence
care, and download a wide range of
resources,” Cahill said.
“The live forum is a great tool
for specialist and non-specialist
professionals to ask questions, gain
peer support and advice, and learn
about new research findings.”
ACE is supported by the Australian
Government Department of Health
and Ageing under the National
Continence Program and is
administered by the Continence
Foundation of Australia.
To connect with other health
professionals via ACE, go to
www.continencexchange.org.au.
For more information about the
Continence Foundation of Australia,
go to www.continence.org.au or
phone the FREE National Continence
Helpline 1800 33 00 66.
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linkmagazine 21
FEATURE:
Incontinence and
personal care
Game
Changer
A life-changing surgical
procedure is helping Australians
with severe incontinence.
Janelle and Greg Solomon launched
Mitrofanoff Support Australia in
2013 after their daughter had the
Mitrofanoff procedure in 2012.
Desperate to find a suitable solution
to their child’s impaired bladder
function and urinary retention
following Bladder Exstrophy at birth,
Janelle and Greg had to look to the
UK for information on the surgery
proposed for their youngest child.
Janelle said they were determined to
find options for their daughter that
would enable her to live a healthy
and active life.
“The Mitrofanoff procedure seemed
like it could be the answer, but there
was little information in Australia,” said
Janelle. “Fortunately, we were able to
speak to Mitrofanoff Support UK who
provided advice and support to us.
“We launched Mitrofanoff Support
Australia to ensure people don’t have
to battle time zones for support and
information for their loved ones or
themselves.”
The Mitrofanoff procedure –
developed by French Surgeon Dr
Paul Mitrofanoff – creates a tube
for voiding the bladder made from
the appendix or bowel. One end of
the tube is embedded into the wall
of the bladder creating a continent
valve, the other is discretely hidden in
the navel or low in the pelvic region
Janelle and Greg Solomon, with daughter Lilah
below the bikini line. The bladder is
voided every 3-4 hours by intermittent
self-catheterisation via the Mitrofanoff
tube. The surgery is often combined
with more complicated procedures,
to either enlarge the bladder or to
create a urinary reservoir. The bladder
neck is often tied off from the urethra
ensuring the patient remains dry.
139 people here who have had the
surgery, but also to raise awareness
of the procedure.”
There are estimated to be more than
300,000 people in Australia who have
severe incontinence and yet little is
known here about this life changing
procedure.
“The Mitrofanoff procedure changes
lives for the better and is readily
available in the UK and Europe,”
said Janelle, whose daughter Lilah
underwent surgery in Australia in
December 2012.
“I have met some amazing and
inspirational people on my journey to
solve my daughter’s bladder health
and retention issues and fortunately
many have shared their stories on our
website,” said Janelle.
“The procedure is not widely known in
Australia so we are working with the
medical profession to understand how
we can make it more readily available.
The 2009 ABS report on Disability,
Ageing and Carers reported
that 316,500 people in Australia
experienced severe incontinence.
139 people underwent the Mitrofanoff
procedure in Australia between 2002
and 2012.
“I realised that Australia needed its
own Mitrofanoff Support organisation,
to not only support the estimated
Help is at hand
Bladder problems can affect up
to one in three women and one
in ten men, yet only one third
of people who have symptoms
seek medical help.
Silver Chain Clinical Nurse Consultant
Manager Deidre Anderson said
bladder control symptoms such as
wetting your pants when you cough
or exert yourself or needing to go
to the toilet in a hurry, can be better
managed when discussed early.
“We encourage those with concerns
to get advice as early as possible as
occasional symptoms often progress
and something can be done,” she said.
“Pelvic floor muscle exercises have been
shown to be effective in preventing
urinary incontinence*, and bladder
calming techniques can be used to
reduce the symptoms of frequency or
the urgency to go to the toilet, such as
not being able to hold on.
“Those suffering from bladder
concerns should remember not to go
to the toilet just in case, as over time
this will reduce the amount of urine
the bladder can hold and you will get
a frequent urge to pass urine.”
In Western Australia, Silver Chain’s
Continence Management Advice
Service, funded by the WA Government,
is available to Western Australians
who are over 16 years of age, hold
a pension or health care card and
have an ongoing bladder and bowel
problem. Qualifying clients receive
a comprehensive assessment by a
qualified Continence Nurse Advisor and
a management plan is developed to
promote a better quality of life through
personalised continence management
strategies, advice and care.
Silver Chain also provides a continence
management service in Queensland,
as part of the broader Post Acute
Care service for clients leaving hospital,
and in South Australia a continence
management service.
The Silver Chain Group is a notfor-profit organisation, comprising
of Silver Chain in Western Australia,
Queensland and New South Wales
and RDNS in South Australia.
www.silverchain.org.au
*(Newman, Denis, Gruenwald, Millard, Roberts,
Sampselle, Williams, Muller and Norton, 2005)
linkmagazine 23
FEATURE:
Incontinence and
personal care
Toilet
s
r
o
r
r
e
t
Former travel writer
Bruce Mumford
discovers there’s
adventure to be had
and lessons to be
learned in his bathroom.
After my carer and wife Louise had
left the house, I felt a sudden need to
rush to the toilet. I had neglected to
ask Louise to hitch up my wheelchair
foot-plate which is impossible for me
to do without falling out of the chair.
So I got to the toilet and tried to rush
out of my chair with the foot-plate
down and, in trying to twist around,
lost balance. As I fell backwards I
noticed, to my horror, that the catheter
bag was attached to the wheelchair.
Fortunately it was the connection to
the catheter tube itself that broke, not
the one to my stomach.
I fell back into the mop bucket with
my head and neck slamming over
the hoist's wheels. For the next
three hours I tried to get myself up.
Somehow I had to get the wheelchair
off my feet, however it seemed
impossible with my feet and legs
tangled and immovable and only
one arm usable. After much effort I
thought of a solution, but this turned
out to be the instrument of my torture.
With my one good arm I was able to
reach the mop which had fallen out of
the bucket. Luckily the wheelchair's
controller was turned on.
Unluckily, the mop head must have
pressed the controller to the ‘outdoor’
setting, which doubles the speed
of the wheelchair. It also got stuck
on the controller stick, because the
wheelchair then zoomed backwards
out of the bathroom, around the
corner and banged up against the
Bruce Mumford has learned to always keep his Vital Call close by
laundry door, far from where I could
get it. The wheels kept going madly,
carving a groove into the tyres and
the corner of the wall.
get back on the chair so that I could
get the phone. But I couldn't drag my
knees up, even when I rolled over, so I
needed to get the chair closer to me.
“The chair leapt
forward crushing my
head violently against
the corner of the wall.”
For this task, the mop seemed once
again the only tool. I tried to get it
to move the controller to ease the
wheelchair a little closer. However, I
had not realised that the speed was
now doubled and the chair leapt
forward, crushing my head against
the corner of the wall. Fortunately,
while on the floor one of the things I
had done was to raise the footplate.
Otherwise I would not be writing this.
By this time I realised I was never going
to get off the floor and would need to
call for help. Unfortunately the phone
was in the pocket of my wheelchair
(I thought) and I had forgotten to put
my Vital Call around my neck that
morning. Eventually I dragged myself
up to the side of the wheelchair where
the phone should have been, however
to my despair it wasn’t there. Now
there was nothing for it but to try and
As it was, I only just managed to
use the mop to move the chair back
before my skull popped. The steel
footplate has a sharp edge which
has made a mess of our house. In
conjunction with our studded non-slip
bathroom floor, it left me with bruises,
abrasions, cuts, muscular sprains and
possible head injury – although this is
hardly worth getting checked out at
my stage of life.
I managed to drag myself on my back
into the bedroom to try and get the
home phone and, to my delight, saw it
sticking out over the edge of my desk.
I then tried to pull it off the desk. After
a while I succeeded and called Home
Care who sent out a carer. I thought
this way I could clean up the blood
stains and the bathroom mess before
Louise got home and maybe save her
a little stress by stoically keeping mum.
Twenty minutes later the door opened
and in came not the carer, but Louise
coming to pick up her laptop.
Bruce’s lessons learned
1. Always keep my phone and
Vital Call with me.
2. Never rush – the
consequences of an ‘accident’
are much easier to deal with
than being on the floor for
three hours.
3. Make sure catheter bag is out
of the chair before I even think
of getting up.
4. Keep the area around the
toilet as free of clutter as
possible
5. Get the footplate fixed.
One-stop-shop for disability
information
The 2014 Adelaide Disability &
Lifestyles Expo, hosted by DIRC
SA, is one of the largest free public
events on the South Australian
disability calendar.
This year the event is replacing the
Disability & Ageing Expo, however
organisers say it won’t exclude
our ageing population, with the
event opened up to services and
products that appeal to all ages.
“This is an inclusive event that’s for
people of all ages - not just those
with disabilities - and everyone is
encouraged to attend,” says DIRC
Marketing & Events Manager Robin
Walden-Semmens.
“Disability is not always permanent
and it can happen at any time - it’s
nice to know the Expo is there to
find out all you need.”
To be held on Friday, November 7, at
the Adelaide Showground, Wayville,
this year’s theme is ‘Dream Big’. It
will feature exhibitors from aged care
services, advocacy, disability support
services, education, employment,
entertainment, equipment, mobility,
physio, recreation, rehabilitation,
sport, wellbeing, youth services and
more.
A one-stop-shop for disabilityrelated information, the Expo is the
ideal place to interact with potential
service providers and to gather
information about support services
and opportunities that are available.
This year's event will be colourful
and full of fun activities, with
performances by entertaining
characters, including artists with
disability, as well as sport and
recreation demonstrations. There will
also be presentations on equipment,
the NDIS, acute care strategies,
employment, Australian Standards,
grief management and a wide variety
of other disability-related topics.
Public Transport Services will be
showcasing two inclusive accessible
buses at the Expo with a ‘Come-nTry’ exhibition. Many other hands-on
activities for the public will be located
around the venue. www.events.
dircsa.org.au or (08) 8236 0575
linkmagazine 25
link | issues
Why me?
Is it wrong to grieve having a child with disability? Is it ok to
sometimes feel ‘ripped off’ by life? Psychologist and mumof-three Silvia Belo-Tomic offers sound advice.
My nine-year-old daughter received an award last week
at school. I took the morning off work so I could see my
beautiful girl on stage. She was so excited!
feelings of being ripped off by life, at
least once in their lives. At the end of
the day, we were ripped off.
The award was presented during assembly at her school.
I took her to the stage, I was so proud of her. She got her
award, a prize and loads of mum’s kisses and hugs, then
applause. We walked away, back to our seats.
As parents of children with special
needs, we grieve for what we lost, for
the life it will never be. It actually has
nothing to do with our beloved child/
ren. It has to do with the feeling of
being ripped off by life, as well as for
the milestones that will never come.
Similar of feelings of sadness when
we remember a loved one is no longer
with us to celebrate something special,
milestones that may never be reached
will remind us of what will never be.
And this will make us experience
feelings. Back to the award presentation scenario, I was
taken by feelings of ‘why us?’, what would have happened if
things would follow its normal course?
As I was sitting watching a student’s performance, out of the
blue, it dawned on me where I was – special school. I looked
around and saw all the other families and said to myself ‘Why
me? Why us?’ And then I thought ‘would anyone else be
asking themselves the same question right now?’.
The initial idea of working with carers of children with special
needs came when I heard a mother say we all think about
things that we don’t necessarily verbalise. Thoughts that
can be translated as us not loving or accepting our children
for who they are. And please don’t get me wrong, I am
crazy about my three children. But in the case of children
with special needs, some of us could feel ‘ripped off’ by life.
The trauma that this event brings is many times underrated. There is an expectation, as soon as birth, that
we must move on and get on with life. At least that was
my experience as well as for many parents I met. Such
expectations would come from professionals, family,
friends, and society.
The grieving process is a process that happens when we
lose a loved one. In our case, as parents of children with
special needs, even though we didn’t lose a loved one,
we lost the ‘normally developing child’, the child that was
supposed to come and, for some reason, ended up not
coming. The grieving process in this case is a bit different
because the loss is subjective. Even though we have our
children and we are so proud of them, and we love them
with all our hearts, they can remind us of what never was.
Experiencing thoughts like ‘why me?’ or ‘what if…’ are not
uncommon. Actually, it would be quite surprising if I came
across a single parent who would not have thoughts and
So the grief comes from the child who never was, not from
our actual children. We cannot help but wonder how it
would have been. And equally important as any process
of grieving, questioning ourselves, being angry, sad, upset
and depressed about it from time to time is part of healing.
There is absolutely nothing wrong with that.
We are human beings before being parents, mothers,
fathers, sisters, brothers. We are allowed to feel, to grieve,
to experience those stages, just like anyone else does.
So next time you are filled with those feelings, take them
for what they are. They are just feelings, they do not define
who you are. The only thing they prove is that you are a
human being, like anyone else, feeling something.
Rejecting those feelings or pretending they are not there
won’t make them go away. In fact, they will continue to
come as long as you have unfinished business with them.
Acknowledging and accepting those feelings is a healthy
way to deal with them. Talking to someone about how you
feel, someone you trust and won’t judge you, will also help
Silvia with daughter Lara
“We are allowed to feel,
to grieve, to experience
those stages, just like
anyone else does.”
the process. Writing down your feelings, having a diary,
drawing or any sort of expression could also help.
So let’s stop beating ourselves up because those feelings
are there sometimes. When we learn to accept and process
those feelings, we become free of self-judgment, or fear of
being wrong for feeling, when in fact what is wrong is not to
allow yourself to feel whatever it is you need to.
Silvia Belo-Tomic is the founder of VOICE for Carers, a
psychologist and mother of three, including a daughter
with Cerebral Palsy and moderate intellectual disability and
a son with ADHD. Sydney-based, she works with carers on
a voluntary basis, writing articles and running free courses.
Visit her blog at www.voice.aussieblogs.com.au
linkmagazine 27
link | interview
y
h
t
l
a
e
h
n
u
The
y
b
a
b
Paralympian swimmer and
motivational speaker Karni
Liddell wants society to wish
for happy babies, not just
healthy ones. Link talks to
Karni to find out more.
Hearing expectant parents constantly
express their desire for ‘a healthy baby’
led to a light-bulb moment for Karni
Liddell. The Brisbane woman, who won
medals at the 1996 Atlanta and 2000
Sydney Paralympic Games, realised
that she had once been the unhealthy
baby that many people so feared.
“I had never really thought about
the fact that I was considered the
‘unhealthy baby’ until I hit my 30s and
began constantly hearing people say
they didn’t care what the gender was,
as long as their baby was healthy,”
says Karni.
“They would say things like ‘I don’t
know what I’d do if I had a child with
autism’, ‘Our lives would be over if
I had a child with a disability’ or ‘My
worst nightmare would be to have a
child with Down Syndrome or Cerebral
Palsy’.
“I was the unhealthy
child, so I started to
ask myself – am I the
nightmare that everybody
was scared of having?"
“I completely understand our innate
desire to have a healthy child, and
obviously we should all want our
children to be healthy, however in
most cases this desire and hope is
somewhat out of control.”
For Karni, who has a muscle
wasting disease called Spinal
Muscular Atrophy, the realisation was
confronting.
“My parents were told that I would not
walk, crawl or live past my teenage
years,” she says.
link | letters
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The Clinical Care functionality of eCase (Care
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linkmagazine 29
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link | interview
“I am a motivational speaker and a Paralympian and would
consider myself a person who is quite comfortable talking
about having a disability and being around disability.
“I have a healthy dose of self-worth so I started to wonder –
if this commonly uttered statement was affecting me, what
was it doing to people with a disability who already doubted
their abilities, worth and value?”
So affected was Karni by people’s obsession with having
a ‘healthy child’, she made it the focus of a TED X talk she
delivered in Brisbane earlier this year.
“As a keynote speaker for the past 12 years being asked
to do a TED talk is the ultimate honour – it was high on my
bucket list,” says Karni. “I couldn’t believe I’d been chosen
– but then, of course, I felt immense fear about what the
heck I was going to speak about, because the content
needed to be completely new.”
Even more surprising to Karni, who presents on Queensland
radio station 4BC, was the reaction from the audience – a
standing ovation.
“I was so nervous before the TED speech as I had no idea
how the audience would react and I was nervous about my
message being misconstrued,” she says.
“I didn’t want parents of children with disabilities to think, in
anyway, that I was undervaluing their grief around having a
child with a disability, or the hardship and heartache involved.
“My message and idea was purely around the language we
use when describing disability and for the first time ever I
wanted to do a speech completely coming from a person
with a disability’s perspective.
“As it turned out, I couldn’t have dreamt of a better reaction,
I just wanted people to get it. So, for them to not only get
it but to applaud it and want to start doing it was utterly
incredible.”
Karni believes that by expressing a desire for only healthy
children, we are telling the ‘unhealthy babies’ they are
not wanted. Instead, she advocates changing the word
‘healthy’ to ‘happy’.
“A child with a disability is a gift, and by changing the way
we describe and talk about disability enables us (people
with disability) to feel like a gift to the world,” she says.
“As a society we now understand the power of words – we
hear constantly of people killing themselves because of
cyber bullying and bullying.
“Seeing somebody in a wheelchair on
TV not talking about disability is more
powerful than talking about it.”
“Words kill, words bruise, words scar, but words can also
empower, enhance and heal. Sticks and stones will break
our bones and words can break our spirits.”
According to Karni, disability is natural, it’s consistent, and it’s
a chance, with 20 percent of Australians currently living with
some form of disability.
“Many children are born ‘unhealthy’ or with a disability due
to many reasons – and all of these things are completely out
of our control and are a possibility for all of us,” she says.
“When parents have a child with a disability the people
around them naturally feel sympathy and sorrow for that
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family and, in most cases, this baby is often not celebrated
in the same fashion as a child born ‘healthy’.
“However, I believe we are all capable of adapting to
whatever deck of cards we are born with. Charles Darwin
said “It is not the strongest of the species that survives, nor
the most intelligent that survives, it is the one that is most
adaptable to change”.
“I believe that with the right equipment, support, attitude and
services people with disability can lead their best lives. People
just want to feel loved, accepted, connected and recognised.
Parents of children with disabilities may not be able to give
their kids able-bodies, whatever that means, but they sure as
heck can give them those things.”
Karni argues that by wishing for a ‘happy’ child, rather than
putting all our focus on health, we enable the ‘unhealthy’
babies amongst us to feel celebrated, cherished and wanted.
“I also think it’s a more realistic wish,” she says.
“Most good parents just want their kids to be happy. By
saying that all we want to have is a happy child will not
increase the chances of having a child with a disability,
however it will increase the chances of people like me
feeling valued and accepted.”
Karni is quick to point out that she isn’t suggesting the
abolition of genetic testing, or that we shouldn’t want our
children to be healthy.
“I am just saying that we often don’t have control over this,
so let’s take back some of the control. Having a disability
shouldn’t be perceived as an automatic reduction in a
person’s self-worth and value on the world.”
Crucial to making disability more accepted in society,
argues Karni, is changing stereotypes about disability,
including society’s presumption that having a disability is
the worst thing that can happen to a person.
“People need to stop judging us in that light as it’s unfair,
untrue and damaging,” she says.
“There is so much fear around disability, which is more
damaging to the individual than the disability itself.
“People have said to me many times that if they ended up in
a wheelchair they “would kill themselves”. Many people have
said this to me as I am sitting in my wheelchair, usually after
one too many rum and cokes, but I have been assaulted with
these words.
“I have met many miserable, unsuccessful and unhealthy
able-bodied people, therefore I know that being ablebodied doesn’t automatically equate to happiness, health
and success. Therefore we shouldn’t assume that having a
disability means a terrible, unsuccessful, unhealthy existence.”
Karni is particularly interested in how young people with
disability maintain their self-esteem and encourages them
not to be defined by the “few things you can’t do because
of your disability”.
“I wish I knew, as a 16-year-old girl, that I was enough,”
she says.
“I will never be able to run a marathon, or take long walks
along the beach, or have kids naturally, but guess what I
can do – I can paddle, I can swim, I can ride a trike, I can
speak, I can love, I can laugh, I can dance, I can cook,
I can make people laugh, I can live independently, I can
contribute and I am enough.
linkmagazine 31
link | interview
“Yep, it’s tough, yep people in the public are going to say
ignorant things, yep some boys won’t like you because you
have a disability, but guess what – life is tough for everyone,
people get bullied because they like science, boys won’t like
able-bodied girls because of their hair colour. Not everything
in your life which is negative or hard will be because of your
disability. You cannot control your body but you can control
your attitude.”
Challenging the belief that disability isn’t sexy is another of
Karni’s goals. She has posed in nothing but body paint for
an Australian Paralympian team calendar, appeared nude
in Black + White Magazine and has featured in a swimsuit
spread for Inside Sport magazine.
“For some reason the public don’t associate disability with
beauty or sexiness,” she says. “However, accidents and
disability don’t discriminate – it chooses beautiful, smart,
funny people every day.
“We talk about body image all the time in the media and are
constantly worried about the fact that women are inundated
with unachievable and misrepresented images.
“Where does somebody like me fit into the discourse?
Nobody looks like me. Nobody walks like me. So where
does that leave my self-worth when it comes to mirroring
myself against the popular media images?
“I think it is vital to have people with disabilities in the
media as we are misrepresented. And seeing somebody
in a wheelchair on TV not talking about disability is more
powerful than talking about it.”
Karni believes that people with disability can live a great life
if they have access to the right equipment, services and
support.
“If we are unable to access a university campus, we can’t
study and get a degree,” she explains. “If the private sector
won’t employ us because it seems too difficult to employ
somebody in a wheelchair, then we won’t be able to work.
“If I was unable to afford my $19,000 power-assist
wheelchair then I wouldn’t be able to be independent, work,
walk my dog and travel, and I would have to rely on the
government for a pension and a carer.
“This, to me, is simple and I wish that people would
consult directly with people with disabilities when designing
buildings, legislation and services, as we are the experts.
And by doing this we have a chance to reduce the fear and
confusion experienced in society in regard to disability.”
We have a simple philosophy at Orana…
We exist to provide support for people living with a disability.
We encourage, we train and most importantly we provide real life choices.
With services in metropolitan and regional South
Australia, we ensure support is tailored towards
personalised service.
CRICOS No. 00114A
With a diverse range of employment
and accommodation options, Orana is
committed to excellence through creating
independence for people living with a
disability.
To find out more about Orana and how
we support South Australian’s with a
disability, visit our website
www.oranaonline.com.au or phone
us on (08) 8375 2000
7212
link | letters
inspiring achievement
Flinders University’s Disability and
Community Inclusion courses teach
you how to facilitate, advocate
and support people living with
disabilities and their families. We
offer a Bachelor of Disability and
Developmental Education and a
Graduate Certificate and Master
of Disability Studies all of which
are available for on-campus and
external study plus an on-campus
PhD in Disability Studies.
Ask us about:
• Pathways for people with Cert IV and Diplomas
• What RPL may be available for previous study
• Mid-year entry
• External on-line learning
For more information contact:
Disability and Community Inclusion
flinders.edu.au/sohs/sites/disability-studies
08 8201 3745
[email protected]
Developmental Educators Australia Inc:
deai.com.au
flinders.edu.au
CRICOS No. 00114A
Our graduates play an important
role assisting people living with
disabilities to participate in
society. They are in high demand
as Developmental Educators and
disability professionals across
Australia and internationally.
Apply for a course in Disability and
Community Inclusion at Flinders
and make an important difference
in people’s lives.
Make a difference with
Disability and Community
Inclusion at Flinders
7212
linkmagazine 33
Be quiet
Australia’s first shopping
centre ‘quiet room’ has
opened in Melbourne.
Developed in conjunction with Amaze,
formerly Autism Victoria, Northland
Shopping Centre’s ‘quiet room’ is
designed to be a sensory, soothing
space for individuals with autism.
It was built by local volunteers and
businesses and led by a passionate
committee with most members having
been personally touched by Autism
Spectrum Disorder (ASD).
“It can be very difficult for parents with
children on the spectrum to be able
to come out to public places, such as
shopping centres, for fear of their child
having a ‘meltdown’ due to too much
sensory stimulation,” said Amaze chief
executive officer Fiona Sharkie.
“And not just children – adolescents
and adults with ASD are often
overwhelmed by the sensory
experience that is ‘shopping’.
“Northland Shopping Centre, together
with our autism experts, have
constructed a specially designed
‘quiet room’ offering individuals and
their carers space to reduce their
anxiety, where they can get access to
power, sensory soothing items, bean
bags and other useful materials to
help reduce over-stimulation.”
Local mum Nicole, who regularly shops
at Northland Shopping Centre with
her four-year-old son, Greg, who is on
the spectrum, said the introduction of
a ‘quiet room’ gave her much more
confidence to visit the centre.
“Greg has sensory challenges so
shopping centres can be quite
overwhelming because of all the
people and distractions,” Nicole said.
“It’s good knowing we can retreat
to the ‘quiet room’ if we are feeling
overwhelmed.”
Nicole encouraged other shopping
centres to introduce similar facilities.
“It’s so valuable and it’s in their
interests to attract people and to
encourage them to stay longer.”
Centre Manager, Michael Bickers, is thrilled
that Northland Shopping Centre has
become more accessible to customers
and centre staff affected by ASD.
“We hope this revolutionary idea will help
individuals and their carers feel more
comfortable in this and other public
spaces and perhaps further engage with
the community,” said Mr Bickers.
“It’s shit and
it’s unfair,
but life is not
fair – even
rock stars get
breast cancer.”
I touch myself
Music journalist Anthea Skinne
r celebrates the life of Aussie
rock legend Chrissie Amphlett
and looks at the breast cancer
campaign inspired by her bigges
t hit.
d Kate Ce
Deborah Conway an
Chrissy Amphlett, lead singer of
Australian rock band The Divinyls, died
of breast cancer in 2013. The rock
legend, who also had multiple sclerosis
(MS), had become a passionate
campaigner for breast cancer awareness
and the need for early detection. Before
her death, it was her wish that her song
‘I Touch Myself’ become an anthem for
women’s health. Chrissy’s friends and
family, along with Cancer Council NSW
and marketing agency JWT Sydney,
banded together to make her dream
a reality, and launched the I Touch
Myself Project in April 2014, a year after
Amphlett’s death.
Chrissy Amphlett was born in Geelong
and formed The Divinyls in 1980. She
became famous for her smoky voice,
raunchy attitude and trademark outfit
of a school dress with torn fishnets.
The band had four Top Ten Albums
in Australia, and ‘I Touch Myself,’ was
their best selling single, reaching No. 1
in Australia and the top ten in the USA
and Britain.
In 2010 Amphlett revealed to the
media that she had both MS and
breast cancer, and that she was
unable to receive radiation treatment
for the cancer due to her MS. At the
time, she said, “It’s shit and it’s unfair,
but life is not fair – even rock stars get
breast cancer. But they’ve been many
girls before me who have dealt with it
successfully. It’s easy to feel sorry for
me but I feel sorry for people who are
suffering it alone.”
The cornerstone of the ‘I Touch Myself
Project’ is a music video featuring a
re-working of Amphlett’s raunchy song
into a tender call for women to listen to
their bodies. The song is performed by
ten of Australia’s most talented female
vocalists – Olivia Newton John, Megan
Washington, Sarah McLeod, Katie
Noonan, Sarah Blasko, Suze DeMarchi,
Deborah Conway, Kate Ceberano, Little
Pattie and Connie Mitchell. The hard
rock beat, and Amphlett’s gyrating dance
moves are gone. They are replaced by
a largely unaccompanied arrangement,
which concentrates on the pure voices
of these talented women, who appear,
naked from the shoulders up, looking into
the camera as if it were a mirror.
Chrissy’s husband, Charlie Drayton,
sums up the message she wanted to
berano have support
ed the campaign.
communicate with this new version of ‘I
Touch Myself’: “Chrissy voiced it clearly
– she wished for all women to be
mindful of themselves when they heard
the tune; to be good to themselves,
inside and out.”
Kathy Chapman, Director of Cancer
Programs at Cancer Council NSW goes
on to explain: “Through this campaign
we are encouraging women to get to
know their breasts better, to know what
is normal for them and to participate in
breast screening if they’re in the right age
range. At different ages there are various
steps women can take to help detect
breast cancer early, however at any age
if women have any concerns they should
contact their doctor.”
The new version of ‘I Touch Myself’
can be downloaded from iTunes, with
all proceeds going towards Cancer
Council NSW.
You can see the video, and find out
more about the ‘I Touch Myself Project’
at www.itouchmyself.org.
For more information about breast cancer
screening visit www.cancer.org.au
linkmagazine 35
link | NDIS
S
I
D
N
e
h
t
m
o
r
f
s
Tale
An innovative program in
Geelong is training people
with disability to share their
experiences of the National
Disability Insurance Scheme.
Link finds out more and meets
two of the graduates.
communication, new media, leadership
and advocacy, was funded by the
Victorian Government and implemented
by the Committee for Geelong – an
independent organisation that leads and
influences long-term outcomes for the
regional city.
Geelong resident Ainslee Hooper has
gone from being sceptical about the
NDIS to expert commentator. The
36-year-old anthropology graduate
was one of 19 people with disability
to participate in the LEAD Barwon
project, which provided participants
with the skills they need to share their
experiences of the NDIS.
During the six-month program
participants spoke at conferences
and events in their local community
and appeared in the media. Five
participants also presented to
the Joint Parliamentary Standing
Committee on the NDIS when it sat in
Geelong in April.
The $400,000 project, which
provided participants with training in
Committee for Geelong chief executive
officer Rebecca Casson said the LEAD
Barwon program, the first of its kind in
Australia, had broken new ground in
its approach to building leadership and
advocacy skills.
“LEAD participants have developed
the skills, knowledge and confidence
to share their early experience of the
NDIS,” she said.
“Their experiences will also help shape
the future direction of the NDIS and
provide valuable assistance to people
beyond the trial sites who will soon
have access to the scheme.”
Have you had an experience
with the NDIS? Link would
love to hear your story – email
[email protected]
New-found
confidence
An interest in public policy
encouraged Ainslee Hooper to be a
part of LEAD Barwon.
“These are the kinds of programs
I find important because they are
driven by the people who are going
to be affected by the changes,” she
said. “It’s really important for the
people using Disability Care Australia
(NDIS) to have a voice because then
the feedback will be accurate.”
Ainslee – who has Spina Bifida with
related Scoliosis and Hydrocephalus
– said she was sceptical when
she first heard about the National
Disability Insurance Scheme.
“I didn't think it was going to
happen,” she said. “I was of the
opinion that I’ll believe it when it
happens. So many other things
haven’t been successful in the past
so I was surprised it got through and
am very happy that it did.”
Now she’s excited to be one of the
first to have her NDIS plan finalised,
and is looking forward to providing
constructive feedback about the
scheme through the LEAD Barwon
project.
“I was really surprised by how much
I enjoyed the whole thing, I took the
advice and it really helped,” she said.
The project has also inspired her to
follow her dream of working in a job
related to her anthropology degree,
as the project is closely tied to her
Honours thesis. Ainslee's passion is
her studies, and she finds it hard to
get her head out of the books.
Time to laugh
As one of the first people in Geelong
to go through the NDIS planning
process, Simone Stevens says there
were “many ups and downs”.
receiving 42 hours of care, a move
she describes as “awesome”, and
is looking forward to getting a new
manual wheelchair.
“My package from DHS went over
to the NDIS automatically,” Simone,
35, said. “When the NDIS first
received my package I was only
receiving 21.5 hours of care which
wasn’t enough because my needs
were significantly changing. So I
had to work with my planner to
make changes. This involved lots of
paperwork, which nobody enjoys,
and a fair bit of confusion. But
my planner was fantastic and I’ve
been working with her consistently
throughout the planning stage.”
“I’m so excited about it because it will
make it so much easier to jump into
people’s cars and access the wonderful
Geelong community,” she said.
Simone, who has Cerebral Palsy
amongst other conditions, is now
“The increase in my hours has had
significant impacts on my health and
wellbeing. My confidence has grown
and I’m more settled, I laugh almost
all the time and don’t get as stressed
as I used too.”
Simone, who acquired Cerebral
Palsy at the age of four months old
through septicaemia, says being part
of the LEAD Barwon program has
also boosted her confidence.
“My experience with the NDIS is now
being shared with the public thanks
to the many opportunities that LEAD
has given me,” she said.
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August
23/3
June 2014 — Vol 23/2
20/12/06 9:28:29 AM
link | accommodation
Giving a voice
A University of South Australia project with the
Intellectual Disability Accommodation Association (IDAA)
has given a voice to hundreds of intellectually disabled
tenants in South Australia.
The nine-week community development
project, undertaken by occupational
therapy students Alyse Lynch and
Ottavia D’Agostino, developed a
Housing Satisfaction Instrument to give
tenants and their families a mechanism
for providing feedback on a range of
housing issues.
The carefully constructed tool that
uses pictorial representation to depict
emotions and feelings, and appropriate
language and layout was piloted over
a one-week period with 22 tenants of
varying abilities and living situations.
The Instrument was developed
following extensive research, a needs
analysis and range of engagement
activities, including a community forum
for tenants and their families.
According to Alyse and Ottavia, the
tool was unique and adaptable to the
circumstances and client.
Above: IDAA
in the project,tenant Rebecca Town (cen
Lynch (right) frowith students Ottavia D'Agtre), who was involved
os
m the Univers
ity of South Autino (left) and Alyse
stralia.
“When given the right tools it was amazing
to see how much this group of individuals
had to express and share,” Alyse said.
“Every individual has different needs and
styles which were important to understand
and adapt for successful communication.”
“The findings have provided the IDAA
with a new outlook and a range of
feedback to use which they have never
had before,” Ottavia said.
The executive officer of the Intellectual
Disability Accommodation Association,
Jennifer Blackwood, said the organisation
has learnt an enormous amount about
their tenants through the project.
“We aimed to create a greater sense of
community where our tenants, whom
have varying levels of ability, had an
effective way of giving us feedback about
what they need and how we can improve
our service,” said Ms Blackwood. “The
project outcomes really hit home to us
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that communicating with our tenant
community, who have wide-ranging
abilities, is a challenge that we need to
continually strive to overcome, and we
are determined to do that.
“The research has given us the
tools to ensure all our tenants can
communicate with us, not just a small
percentage of them.”
The Housing Satisfaction Instrument
will be implemented by IDAA annually
and amended as required under the
National Regulatory System.
IDAA is a non-government, not-forprofit organisation that provides high
standard, appropriate and low-cost
housing to people with an intellectual
disability. IDAA’s portfolio includes
103 properties across metropolitan
Adelaide. www.idaa.org.au
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linkmagazine 39
link | disability care
A home
for life
A groundbreaking complex in
Israel is taking community care
to a whole new level.
Despite current conflict in the Middle
East, a positive project in the Galilee
region of Israel is creating light in this
part of the world.
Kishorit is a community where adults
with special needs live, work and play in
a safe, secure environment. Individuals
have a say in how their community is
run, and can choose to live alone, with
a friend or a romantic partner.
The only complex of its kind in the
Middle East, Kishorit provides a home
for life for adults who need extra
support, but whose ageing parents
can no longer care for them.
Based on the ‘kibbutz’ concept
– where all community members
engage in meaningful employment and
contribute to the community – the nonprofit facility is home to 140 adults with
special needs, including developmental
disabilities and mental illness.
Kishorit’s former director of resource
development Ms Dita Kohl-Roman,
whose 43-year-old brother Yariv has
lived in the community for seven
years, was recently in Melbourne. She
says Kishorit not only provides longterm residential care, but vocational
and recreational opportunities.
“Individuals are treated with the
utmost respect and care is taken to
ensure their dignity,” she says.
Community members live in supported
apartments in the city of Carmiel or in
the village-like kibbutz. They can work in
the mainstream workforce or in one of
Kishorit’s ten businesses, which include
the largest organic goat dairy in Israel,
a cheese-making factory, vineyard and
winery, wooden toy factory and organic
bakery. Products are sold to the wider
market, generating revenue to help fund
the community, while other funding
comes from philanthropic donations.
“At least 50% of Kishorit members do
not have to pay any entrance fees –
those who pay give a donation that
covers those who can’t pay,” says Ms
Kohl-Roman.
“As for operational costs, each member
gets an allowance from the government,
which covers their basic needs such as
food and basic health services.
“After work hours they enjoy many
leisure activities. There is also a
gym, horse-stable, swimming pool,
a lounge, an art studio, and acres
of orchards, agricultural fields and
exquisitely manicured gardens.”
Ms Kohl-Roman, now an entrepreneur
and publisher of Jewish cultural
magazine Eretz, says a members’
council makes decisions for the
community, and individual members
make choices about their personal lives.
“Relationship education and support
are provided to maximise the
members’ social success,” she says.
“Members also provide input
regarding their work placement and
medical treatment."
communities and states around it,”
says Ms Kohl-Roman – an adviser to
the former Israeli Minister of Foreign
Affairs, Tzipi Livni.
“Relationship education
and support are provided to
maximise members’ social
success.”
“In the beginning Arab people with
special needs tried to live in Kishorit with
its Jewish members, but this did not
work because of differences in language,
culture and food. For example, the
residents at Kishorit live as couples when
they wish to do so. The Arab members
won’t allow that – and need separate
quarters for men and women.
Praised internationally as being a
leader in community care, work is also
underway on a sister community for
Israeli Arabs living in the Galilee region.
“So, together with Arab social workers
and leaders, the concept of a sister
community was born, so that the Arab
group will have their culture led by
Arab professionals and the cooperation
with Kishorit will be fulfilled at work and
through some of the leisure activities.”
“There is a big cultural difference
between Israel and the Arab
To find out more search ‘Kishorit
Home for Life’ on Youtube.
link | advertorial
Advice at the ready
Help is at hand for South Australian
families and individuals living with
autism spectrum disorder (ASD), with
Autism SA offering a range of support
and services.
Established in 1964, Autism SA is a
recognised leader in helping families
and individuals living with ASD.
Manager of strategic marketing and
communications Anthea Rice says
Autism SA works to ensure that people
with ASD get the most out of life.
“People with ASD are at the centre
of everything we do – we provide
individualised and person-centred
services and support,” she said.
“Whether you are a person living with
ASD or a family member, carer or
a professional looking for the latest
information about ASD, Autism SA
can assist.
“Autism SA aims to improve life
outcomes for people with ASD by
providing and facilitating the very best
information, connections, expertise,
education, services, support and a
strong representative voice for people
in our community.”
Autism SA and has given families the
ability to continue to access highly
valued ongoing services.”
According to Anthea, the introduction of
the National Disability Insurance Scheme
(NDIS) and the prevalence of autism
spectrum disorder in Australia now
reaching one in 100, expert knowledge,
awareness and exceptional service
delivery has never been more in demand.
Autism SA can provide a range of
services to assist parents and families,
including assistance in coordinating or
managing life stages, transitions and
supports, assistance to integrate into
school or other educational program,
help with travel/transport arrangements,
development of daily living and life skills,
early intervention support, specialised
assessment of skills, abilities and needs
and therapeutic support.
“Autism SA has seen a number of
children under six years old with ASD
transition to the NDIS over the past
year,” she said. “This has enabled
those clients and families to purchase
vital therapy and consultancy from
www.autismsa.org.au,
ph: 1300 288 476
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linkmagazine 41
breakthroughs
Robot walker available in USA
The United States Food and
Drug Administration has
approved sale of a product
that enables individuals with
Spinal Cord Injury (SCI) to walk
independently.
The ReWalk Personal System is a
wearable robotic exoskeleton that
provides powered hip and knee motion
to enable individuals with SCI to stand
upright and walk. Having undergone
clinical studies and extensive
performance testing for personal use, it
is the only exoskeleton approved to be
available throughout the USA.
“This revolutionary product will have
an immediate, life-changing impact on
individuals with spinal cord injuries,"
said chief executive officer of ReWalk
Robotics, Larry Jasinski.
"For the first time individuals with
paraplegia will be able to take home this
exoskeleton technology, use it every
day and maximise on the physiological
and psychological benefits we have
observed in clinical trials.”
ReWalk 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.
www.rewalk.com
New international guidelines for diagnosing Cerebral Palsy
Australian researchers from the
Cerebral Palsy Alliance have
developed a new way of diagnosing
cerebral palsy in infants.
Using a ‘General Movements
Assessment’, researchers in Sydney
Neonatal Intensive Care Units have
brought down the age of diagnosis
from 19 months to three months.
“If I had a stroke, I wouldn’t be happy
waiting two years for a diagnosis and
treatment, by which time the damage
would have become permanent,”
said Professor Nadia Badawi, Head
of Research with the Cerebral Palsy
Alliance. “Well that’s what we accept
with children with cerebral palsy when
early intervention in infancy could
re-shape their brains, for example
using what’s called a motor learning
approach, where we train the brain to
learn new movements.”
The new international guidelines on
early intervention and early diagnosis
of cerebral palsy were presented at
a recent meeting of cerebral palsy
experts in Vienna, funded by the Neil
Balnaves Foundation.
“It is appalling that while cerebral palsy
costs $US40 billion worldwide each year,
less than 0.025% or $US10 million was
spent worldwide last year on research to
find a cure,” Mr Balnaves said.
“It’s the third time we’ve funded
this global research meeting on
cerebral palsy and the fruits of the
first meetings are coming on stream.
Now we need to get doctors, physios
and nurses in the field to adopt the
evidence for early diagnosis and
treatment that’s emerging.”
Mr Hassan Chahrouk, whose threeyear-old son, Abdul, has cerebral palsy
says his son has already benefitted
from the Australian research.
“It used to take months to be sure
your child had cerebral palsy but
he had what’s called the General
Movements Assessment early in life,
which allowed the specialists to give
him treatments exactly focused on his
needs. Abdul’s improvement has been
fantastic,” Mr Chahrouk said.
The Vienna meeting also heard news of
other cerebral palsy research projects
being conducted around Australia,
including a technique adapted from
adults with stroke to young infants
called Action Observation Training,
which uses mimicry to get the baby to
use their affected arm.
“It is designed to train the injured
brain as the infant starts to learn to
reach and grasp toys,” Professor
Roslyn Boyd, from the University of
Queensland, said.
Another University of Queensland
researcher, Dr Kerstin Pannek,
is using the emerging science of
‘connectonomics’ to study how neural
networks in the brain evolve and, in
cerebral palsy, go wrong.
www.cerebralpalsy.org.au
link | support
Social support
Two social groups for adults with
Autism Spectrum Disorder in Brisbane
are helping spread the message that
autism is not a disease with broken
people needing to be fixed.
Spokesperson Garry Burge, who
was diagnosed in 1998, says the
independently run groups help alleviate
social isolation – a common issue for
adults on the Autism Spectrum. They
are currently held at the University of
Queensland and Brisbane Central Library.
“There are many advantages of having
an adult social group as it can become
an important taskforce in tackling the
many issues and challenges facing
adults on the Autism Spectrum,” says
Garry.
“The group allows adults on the
Autism Spectrum to have a say and
provide input into the need for services,
ways of overcoming social isolation
and, more importantly, the issues of
unemployment and accommodation.
“The groups are primarily social, with
an emphasis on overcoming social
isolation. They are not clinical in
nature and include social outings.”
Garry, who works at the University
of Queensland Library, says finding
employment and understanding within
the community can be extremely
difficult for adults on the Spectrum.
“I was bullied quite severely while I was
at school and found it difficult over the
years to find employment,” he says.
“Having struggled to get through
academically, I was able to graduate
with a Bachelor of Arts Degree from
the University of New England in 1999.
“From here finding employment was a
real challenge, however in 2005 I was
fortunate to find casual work at the
University of Queensland.”
Garry said moves are also underway
to establish a social group in Orange,
NSW, with Ben Wilshire – an adult on
the Autism Spectrum who lives in the
area – working to get the initiative off
the ground.
For more information visit
www.garryburge.com
linkmagazine 43
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AUGUST-2014
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opinion | peter coulter
A fitting
t
n
e
m
h
s
i
n
u
P
Malice Aforethought
Our resident columnist Peter Coulter
considers the effect that serious crimes
such as abuse can have on their victims.
So malice aforethought is understood
as any action taken for personal
gain leading from information that is
known to be of detriment to another.
Why now is this precept not applied
to persons accused of such heinous
crimes as rape, importation of drugs,
child molestation and abuse and other
crimes of a sexually based nature?
The victims of these crimes are very often left seriously
damaged and unable to assume a normal life subsequent
to its commission. Often they are left terrified of any human
contact, interactions with the opposite sex and, in all cases,
seriously damaged mentally. A significant proportion also
commit suicide. The perpetrators of the crime responsible
for all this are fully aware of these outcomes.
The recent case against Rolf Harris has brought all this to mind.
Although found guilty, one must wonder how much of a danger
he now is to society and, at the age of 84, is a custodial
sentence either warranted or justified? And what punishment
is efficacious and effective as deterrent and adequate
punishment? Harris is the primary carer for his wife, also aged
Positive
speaker
with
‘Abilities’
NOUN
A condition of making a decision with prior
information and being caught out in that
decision leading to actions of detrimental
impact on a third party.
and disabled, so now she too is under huge stress. He has
been stripped of all his honours, accolades and privileges, and
had his reputation dragged through the mud. At his age I feel
it would be a miracle if he could get things to stand alone. His
pleasures in life now are a decorated wobble board and a
gently vibrating didgeridoo, or most likely a didgeri-don’t.
But even given all this, we must apply not law but justice
as we are submerged in the one and suffering a serious
lack of the other. At the time of the commission of his
crimes he was fully aware of all the above so is guilty of
malice aforethought and its ramifications. Recidividism is
not an issue with Harris but is with younger men and it is
also well known that incarceration is no deterrent and often
exacerbates any extant problems. Prison time is also very
expensive and a burden on society.
In closing, I put the proposition that persons found guilty of
the aforementioned crimes are guilty of causing a person or several people - to become disabled, and knowingly so.
For this crime what is a fitting punishment?
tions to educate
Keynote presenta
ort workers
students and supp
with a disability
✓ What it is like living
ive
ly and being posit
✓ Living independent
rks for me
nding (NDIS) wo
✓ How Individual Fu
to stand
‘abilities’ that its OK
✓ Show people withs and to be motivated!
up for themselve
le with disability in
✓ How to help peop
a respectful way
If oNly
youw
kne
linkmagazine 45
AUGUST 2014
Australasian Better Boards
Conference
August 1–3, Adelaide
www.betterboards.net/conference-2014
Strengthening Disability
Advocacy Conference
August 4–5, Melbourne
www.daru.org.au/strengtheningdisability-advocacy-conference
Learning Difference Convention
August 6–7, Sydney
www.learningdifferenceconvention.
com
Disability Employment Conference
August 6–7, Gold Coast
www.conference.
disabilityemployment.org.au
The Royal Queensland Show
August 8–17, Queensland
www.ekka.com.au
The NDIS one year on Conference
August 11–12, Geelong
www.disabilityservicesgeelong.org.
au/ndis-conference/
Disability National Acquired
Brain Injury Conference
August 11–12, Bendigo
www.braininjuryaustralia.org.au
Australian Long-Term
www.longtermunemployment.org.au
Australian Rehabilitation &
Assistive Technology Association
Conference
August 20–22, Canberra
www.arata.org.au/conference
Hearing Awareness Week
August 24–30
www.hearingawarenessweek.org.au
15th International Mental Health
Conference
www.anzmh.asn.au/conference
SEPTEMBER 2014
National Asthma Awareness
Week
September 1–7
www.asthmaaustralia.org.au
Footy Colours Day
September 5
http://www.footycoloursday.com.au
National Motor Neurone Disease
(MND) Conference
September 8, Gold Coast
http://www.mndaust.asn.au/Getinformed/
Aged and Community Services
Australia (ACSA) National
Conference
September 7–10, Adelaide
www.acsaconference.org.au
Nepean Disability Expo
September 12–13, Penrith
http://www.disabilityexpo.org.au
Rehacare International Trade Fair
and Congress
September 24–27, Germany
www.rehacare.com
The Color Run
September 28, Townsville
www.thecolorrun.com.au/
townsville/2014-09-28/
Great Holidays and Travel
for people with disabilities.
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link | books
Teaching teens about sex
If Only You Knew Too
Author Jacy Arthur hates being
treated like “a poor disabled
person”. Her latest book If Only
You Knew Too aims to change the
attitudes of society and the way we
treat people with disability.
“I am torn in both worlds,” says
Jacy, who has Cerebral Palsy and is
hearing impaired.
An Ebook to help people with intellectual and learning
disabilities learn about relationships, health and hygiene has
been launched by New Zealand company Health Click.
Designed for use on computer tablets, like the iPad, the Me
EBook uses touch screen technology, pictures, animation and
voice-over to explain important and challenging topics such
as masturbation, contraception, and inappropriate touching.
It’s aimed at children aged 11 and over, as well as adults.
The managing director of Health Click Annette Milligan – a
registered nurse and District Health board director who has
worked in sex and health education for 25 years – says it is a
scandal there has not been more support to help intellectually
disabled people learn about their bodies and sex.
“People with intellectual disabilities are more vulnerable to
sexual abuse and victimisation, often because they haven’t
been taught about their bodies, about relationships, or
about what is and isn’t appropriate when other people
touch them,” she says.
“Many parents and caregivers are very concerned about it.
“When I first started in the sex education field the idea that
disabled people should be taught about their bodies, and
that they had a right to a sex life when they grow up, was
completely taboo.
“Thankfully we have moved on since then, but there is a lot
more to do. We have developed the Me EBook and made
use of emerging technology to provide crucial education
on sex and health education to people with intellectual and
learning disabilities.”
www.healthclick.co.nz
“I live in a ‘normal’ world but am treated
like a ‘disabled’ person. When I’m out people
constantly treat me like I don’t have thinking capabilities
because I walk like a drunk and shake like a person who
has Parkinson’s disease, but I don’t.”
According to Jacy, If Only You Knew is the perfect title for
her, because once people know her on the inside they
realise she is just like them.
“Ok, I have Cerebral Palsy and am hearing impaired but
that doesn’t stop me from being ‘normal’,” she says. “I
am determined, positive and an outgoing person with a
big personality. I am a mother of a teenage son and have
a partner with Cerebral Palsy and he has no interest to
be ‘just another poor disabled person’ either. We both
drive our cars and run our own businesses. I’m an author/
graphic designer and Brad is a computer programmer, so
we are no ‘dummies’!”
Jacy says the response to her first book was overwhelming.
“Many (people) had a really good look at their lives and
changed their way of thinking when it came to people with
disabilities. The sympathetic attitudes and awareness are
slowly changing and people are realising that we are all the
same: human.”
She says If Only You Knew Too aims to educate families,
inspire hardworking carers and encourage disability
service providers to think outside the circle. “I also want to
encourage people with disabilities to be involved in their
community and to be active in their own lives, to try new
things, to live a good life and not be afraid to fail.”
www.ifonlyyouknew.net
linkmagazine 47
Celebrating dementia carers
People caring for a loved one living with dementia attended a free high tea at
the Hilton Sydney on June 25, thanks to HammondCare – an independent
Christian charity. Designed to recognise the valuable contribution that
careers make, the event gave carers a chance to meet others facing similar
circumstances and gain access to resources and support, while enjoying
afternoon tea in a relaxing setting.
1
2
3
1. Joan O’Nains and June O’Nains.
2. Claire Smith, Barbara White and Shirley Plumb.
3. Josephine Madgwick and Ai-Lin Piccini
Footy fever
2
The Intellectual Disability Association of South Australia
escorted a group of 80 people with intellectual disabilities
and their carers to a Port Power vs Western Bulldogs
AFL match at Adelaide Oval on June 21. The group got a
bird’s eye view of the action, sitting in a corporate facility
normally used by cricket commentators. Special guest
was the Premier of South Australia, Jay Weatherill.
1. Premier Jay
Weatherhill with
Eddie.
1
2. Charlie Taplin,
Jess Willougby,
Kate Aartsen,
Adam Aagaard
and River
Tielen-Fry.
3
3. Brayden and
Mark get
behind the
Power.
:28 pm
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
For more information
phone 1300 789 845 or visit
www.atsaindependentlivingexpo.com.au

Nathan Charles - Link Disability Magazine

Transcription

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