- Paraquad

Transcription

- Paraquad

ParaQuadNews
www.paraquad.org.au
ISSUE 3 / SEPTEMBER 2014
PARAPLEGIC & QUADRIPLEGIC ASSOCIATION OF NSW
AUS $5.95 | FREE FOR MEMBERS
Ferguson
Lodge Choir
performs at
the Opera
House
USED IN
FEB 2009
USED IN
MAY 2012
USED IN
MAY 2009
USED IN
AUG 2012
USED IN
AUG 2009
USED IN
NOV 2012
USED IN
NOV 2009
USED IN
FEB 2013
USED IN
FEB 2010
USED IN
MAY 2013
USED IN
MAY 2010
USED IN
AUG 2013
USED IN
AUG 2010
USED IN
NOV 2013
USED IN
NOV 2010
Meet our
Clinical
Programs
team
Discovering
the artist within
USED IN
FEB 2014
with Rhys James
USED IN
FEB 2011
USED IN
MAY 2014
USED IN
MAY 2011
USED IN
SEP 2014
USED
For the latest news visit Facebook: ParaQuadNSW
or IN
www.paraquad.org.au
AUG 2011
Contents
Chairman’s Column
Welcome to the September issue of
ParaQuad News. This issue reminds us all
that we are surrounded by many talented
people, and that for many people (when
initially faced with life after a spinal cord
injury) realising these talents or identifying
new talents can be a challenge. We have
a number of members featured in this
issue that are sharing their talents and
passions. The artistic flare of Rhys that has
been recognised by organisations locally and internationally, can
provide inspiration to our many art-related scholarship holders
as a testament that art can provide a lifetime of enjoyment and
potentially a source of employment.
USED IN
FEB 2009
USED IN
FEB 2011
USED IN
MAY 2013
USED IN
MAY 2009
USED IN
MAY 2011
USED IN
AUG 2013
12 Japanese experts hear about
EB Dressing Scheme
USED IN
AUG 2009
USED IN
AUG 2011
USED IN
NOV 2013
USED IN
NOV 2009
USED IN
NOV 2011
USED IN
FEB 2014
USED IN
FEB 2010
USED IN
FEB 2012
USED IN
MAY 2014
USED IN
MAY 2010
USED IN
MAY 2012
USED IN
SEP 2014
6 Let there be music - Jamboxx
9 Autonomic Dysreflexia
14 The wide brown land for me
Art can come in many forms and there is something to be
said about how music can light up a room and can transcend
generations. What a blessing it is to see that making music is
now possible for all levels of musical and physical ability and in
this issue you can read how it has been able to bring a family a
little closer together.
22 Grant Nickel wins gold!
The NDIS has now been in the Hunter region for 12 months and
it is encouraging to see continued positive outcomes for those
in the region that have now transitioned into the scheme and
how our northern region branch has been able to assist when
requested. As the next Local Government Area comes into the
scheme, ParaQuad is pleased to be able to expand its OT offering
to support this. A new Occupational Therapist (OT), Erin Doyle
is based in the Hunter region which will allow for a timely OT
service for our local northern region branch constituency.
Our northern region branch continues to show us what a close
knit community can do together with the ever growing social
calendar of exciting events. Many sporting pursuits both casual
and competitive are now made possible. Thank you to Grant
Nickel for sharing his story on his recent handcycling success and
for joining our northern region handcycling enthusiasts to share
some tips to stay safe while pursuing this sport.
I am pleased to say that the financial year 2013/14 ended well and
this provides ParaQuad with a good platform to begin the next
financial year. Maintaining the viability of the organisation is
paramount to ensure that we can continue to deliver services to
our members, clients and customers of ParaQuad and BrightSky.
I would also encourage all our members to join us in Newington
for the upcoming AGM on 19th November as we report on the
year’s outcomes and look to the future.
22 IN
Northern
USED
AUG 2010
Region
USEDUpdate
IN
AUG 2012
28 Lifestart launches Oi
USED IN
NOV 2010
USED IN
NOV 2011
Regards
Anders Halvorsen
Chairman
A translation and interpreting
service is available to assist with
ParaQuad services. Assistance is
available in 160 languages.
ParaQuad Sydney Office
6 Holker st, Newington Nsw 2127
PO Box 6347 silverwater dC 1811
Ph: 02 8741 5600 Fax: 02 8741 5650
e-mail: [email protected]
Membership Services Hotline:
1300 662 822
ParaQuad Northern Region Office
65 The avenue
wickham Nsw 2293
Ph: 02 4969 6388
Fax: 02 4961 6101
Advertising and Editorial Enquiries
Ph: 02 8741 5669 Fax: 02 8741 5650
Board of Directors
Office bearers
Mr anders Halvorsen* – Chairman
Mr john renshaw – deputy Chairman
Directors
Mr Peter debnam
Ms joy Cusack
Mr Brian Cohen*
Mr Philip McCrea
Mr steve Osborne
AGM Notice
19 November 2014, 3pm at
6 Holker Street, Newington
Mr Mark Tonga*
* Denotes person with a disability
We welcome your contribution
ParaQuad News welcomes
contributions. we cannot guarantee
to publish every article we receive, but
we will give all contributions careful
consideration. Please discuss your
proposed contribution with the editor
on 02 8741 5627. digital photographs
need to be a high-resolution .jpg or .tiff
(at 300dpi).
Disclaimer:
The views expressed in ParaQuad
News do not necessarily reflect those
of ParaQuad Nsw (the Paraplegic and
Quadriplegic association of Nsw).
The publisher cannot ensure that each
advertisement complies with the Trade
Practices act. responsibility rests with
the advertiser.
Design
pdq design
ParaQuad News • jaNuary 2010
1
FEATURE
n
o
i
s
s
a
p
r
e
n
n
i
e
h
t
g
n
i
k
c
Unlo
an talent
p
Imagine going to bed at age 13 thinking about what you just did at
school and what challenges the rest of the week will bring, only to
wake up in the morning and not be able to walk.
In 1998, this very experience
happened to Rhys. Without
warning he went to sleep able to
walk and then woke up unable
to move. The diagnosis was
Transverse Myelitis resulting in
paraplegia.
Rhys lived in the Port Stephens
area however due to the rarity
of this disorder, Rhys did
not experience the rigorous
rehabilitation process that people
would generally go through post
spinal cord injury. He spent 4
months in hospital while he waited
for his home to be modified. With
very little support after his time in
hospital, Rhys adjusted to his new
life circumstances as best he could
and returned to his school (which
was accessible).
4
ParaQuad News • sePTeMBer 2014
Watching him
work in his studio
demonstrates
how with
passion, skill
and vision
anyone can be
successful and
enjoy what they
do for a living.
From Rhys’ early years before he
became paraplegic he enjoyed
taekwondo, golf and science fiction
movies. He had originally wanted
to be an architect until the length
of time to become an architect
put him off. His love of drawing
however did not wane and while
still in school (about Year 10) he
discovered he could draw. In Rhys’
words “… a bit better than some
of the others…”
After Year 12, Rhys completed
a TAFE IT course however his
passion was not in IT, so he then
completed a Fine Arts course at
TAFE - the campus was more
accessible than the university
campus and the TAFE course
was a more practical hands on
course. Digital Art was an emerging
medium at the time and Rhys
enjoyed exploring what he could
do in this new digital world.
FEATURE
Science fiction is still a genre
that Rhys enjoys and it is often
the subject of his art. Rhys is
an accomplished artist with
traditional mediums (oils,
watercolours, charcoal etc) and
also in the digital art medium.
He has exhibited five times at the
Supanova pop culture exhibition
(in Sydney) and his artwork has
also been exhibited as part of
The Walking Dead show in Los
Angeles. In addition to his Sci
Fi inspired work, Rhys also has
a number of elegant romantic
pieces representing some of the
most beautiful women to have
ever graced the silver screen
Transverse Myelitis is a
neurological disorder caused
by inflammation across both
sides of one level or segment
of the spinal cord. It can occur
in adults and children, both
genders, in all races and with
no apparent links to family
medical history. It is estimated
that 1-5 people per million are
diagnosed. In the USA there are
approximately 1,400 new cases
each year, in Australia the
number is much smaller.
(Marilyn Monroe, Audrey Hepburn
– to name a few). Rhys will attest
that the challenge for any artist
that encapsulates different eras
and genres is to be able to keep
the feel of the era authentic. Rhys
works throughout the year for
each exhibition and during that
time can create 40-50 new pieces.
Rhys creates his digital artworks
by using a pressure sensitive
touch screen which Rhys
describes as “like drawing on
glass”. The ability to replicate the
paper drawing techniques onto
this technology has been self
taught (mostly) by reading
articles and experimentation.
In 2007 Rhys began to turn his
hobby and passion into a career.
He now has a commercial aspect
to his art. The challenge for
Rhys in that many clients don’t
always know what they want
(or can put their thoughts into
words) however his ability to
take a brief and turn it into a
commercially viable piece of work
is one of the reasons he has seen
success here and abroad. He has
clients in Australia and overseas
including comic book covers,
magazines covers (Mens fitness
and Penthouse, Limelight, etc),
musical artists album covers,
documentary posters and movie
promotion artwork.
Rhys relocated to Sydney in 2012
and has since set up his own studio
at home. Watching him work in
his studio demonstrates how with
passion, skill and vision anyone
can be successful and enjoy what
they do for a living. To see some
more of Rhys’ artwork go to:
http://rhysjamesillustration.com/
5
FEATURE
Let there
be music...
Richard broke his neck in 1983 after diving
off a bridge south of Wollongong, which
resulted in C4/5 spinal cord injury. Midway
through 2013 he discovered a device that
would allow him to play music.
It is called “The Jamboxx”.
He got in contact with Mike and
Dave, the brains behind the device
and after a few conversations he
was lucky enough to become a Beta
Tester and a couple of weeks later
Richard received a prototype to
begin testing.
The best way to describe the
Jamboxx device is that it looks like
an electronic harmonica. When
accompanied with the Pro Suite
software you can select any of the
24 default instruments that are
available, for example harmonica,
flute, bass guitar, violin, saxophone
just to mention a few. People using
this device do not have to have any
formal music training or need to be
able to read music. The software
provides the opportunity to “play
by the numbers” that come up
on the screen with the tunes. In
Richard’s words “I don’t have a
musical bone in my body but after
a few hours I was very impressed
at what I was able to do”.
It has been designed so that it can
be used by someone with very
limited breath. People all over
the world that are on a respirator
had no problem using it and the
6
only limitation is a persons
imagination not their ability.
Richard recalls he was busy
playing one evening long
after receiving the Jamboxx,
when his nephew and
partner turned up with their three
children (all under four years of
age). When the children heard the
music they came running into his
room where they stood beside him
smiling and watching attentively
to him playing. When he finished
playing “You Are My Sunshine” all
three at once said “more please”
so he continued playing different
tunes. Richard was delighted as
he was able to connect with them
in a way he had not been able to
previously. In his words “it was
totally awesome being able to do
something with them like that”.
The Jamboxx is not just a musical
device; it can also be used as a
mouse/game controller. Dave
Whalen, one of the creators,
is a person with high-level
quadriplegia like Richard and
uses Jamboxx to paint the
most amazing paintings using
a program called “ArtRage”.
As more people start creating
different software to use with it,
the uses for the device will be
endless. Richard has also used
the Jamboxx to play computer
games that previously he could
only watch others play. He
recalls that the first time he
went to a website where he
could play downhill skiing just
by moving left then right &
sipping & puffing, he did it for
hours “it was so much fun finally
being able to play games rather
than watching somebody else”.
Richard loved it so much that now
that testing is over he has bought
his own brand-new model!
To see more about Jamboxx go
to http://www.jamboxx.com/
FEATURE
Meet our Chairman of the Board
Mr Anders Halvorsen had a motor cycle accident on his way to the
Bathurst Bike races on 21st April 1973 (Good Friday). This resulted
in paraplegia due to a complete T4 spinal cord injury. Anders joined
ParaQuad NSW as a member in July 1973.
In 2004 Anders took the step
to join the ParaQuad Board of
directors. The reason – in his words
“he wanted to give something to
the ParaQuad community”, his
desire was to be of some help. In
November 2012 he was elected to
the position of Chairman.
affect the organisation financially
and also from a risk perspective.
These concerns are then analysed
and taken to the Board to ensure
risks are mitigated where possible
and the financial sustainability
of ParaQuad is monitored and
addressed.
Being a member of the ParaQuad
Board is not just about attending a
couple of meetings a year. All the
Board members sit on a variety of
sub-committees. The role of subcommittees is to explore areas at a
higher degree of focus than can be
done during a full Board meeting
if the subject matter requires it.
Anders has always been an active
Board member and currently sits
on three sub-committees: the
Finance and Risk Committee,
Governance Committee and the
Remuneration Committee.
The Governance Committee is
responsible for developing the
Governance statement for the
organisation which is vital for
maintaining the various quality
accreditations, and outlines the
roles and responsibilities for
Board members. Some of these
responsibilities include the longterm financial viability of the
organisation, compliance with
statutory and legal requirements
and representing ParaQuad on
external committees in advocacy
and other consultative forums.
The purpose of the Finance
and Risk Committee is of high
importance as it explores in detail
any potential issues that may
Anders is also an active member
of his local community. He sits on
three other Not-For-Profit boards,
the North Coast Community
Housing (900 tenancies for low
In memory
income earners on the North
Coast of NSW), the Irene Gleeson
Foundation (providing education,
food and medical help to children
in northern Uganda) and the C3
Church Ballina (a contemporary
church with two campuses –
Ballina and Byron Bay).
Anders has been married to Julie
for 40 years and has three “miracle”
children and two grandchildren.
He has completed a Masters of
Business Administration, is a
Member of the Australian Institute
of Company Directors and is a
Justice of the Peace. He also runs
his own consulting business where
he provides consultation services
to businesses on the North Coast.
Mr George Sidiropoulos
Mr P.N (Nigel) Glass
George Sidiropoulos was born in Greece and
immigrated to Australia in 1963. George had a car
accident in 1971 resulting in a T5 spinal cord injury.
Originally he came to Ferguson Lodge for respite
then as a permanent resident in July 2012. He loved
living there and quickly became friends with other
residents and employees. George loved to garden and
nurtured the lemon tree back to health. He loved
growing flowers and was looking forward to coming
home and preparing the new gardens beds for Spring.
George was known for his kind generous nature and a
man who enjoyed life. George is survived by a caring
and loving sister, Margaret. George will be sadly
missed by all who work and live at Ferguson Lodge.
Mr Nigel Glass passed away on 22nd May
2014 after a long battle with brain tumours.
Nigel was a man of great conviction, intellect
and commitment. His drive to ensure the
sustainability of the Foundation (and the
Foundation’s predecessors the ParaplegicQuadriplegic Association and Civilian Maimed
and Limbless Association of WA) was rarely
faulted in his 29 years of service. Nigel sat on
many Boards and committees across WA and at
both State and National levels. ParaQuad’s CEO
Max Bosotti worked alongside Nigel (and other
executives of spinal injury organisations) during
the formation of the Australia Spinal Injury
Alliance during 2013.
15.5.45-8.8.14
69 years old
Spine and Limb Foundation (Inc.), WA
7
FEATURE
Clinical Programs Team
BrightSky
Australia and
ParaQuad NSW
expand and
consolidate
clinical services
The Clinical Programs team provide
free clinics and fee-for-service
offerings for continence, wound
care, spinal care, occupational
therapy, peer support and social
work services.
The free clinic at our Newington
office provides an advisory service
for clients who need help with
product usage issues related to
pre-identified medical conditions in
relation to continence, wound care,
spinal and aged care. Individual
consultations with the Clinical
Nurse Consultants are available
free of charge at the BrightSky
office in Newington.
Our Occupational Therapists free
clinic at Newington includes a
seating clinic and splinting service.
Additional services that our OTs
can assist with include general
home modifications assessments,
NDIS and LTCS assessments.
Meet the nursing team!
Kylie Wicks CNC (Level 3)
Spinal/ Continence
Dip Applied Science (Nursing),
Bachelor of Health (Nursing),
Certificate of Spinal Cord
Injury Nursing (College of
Nursing), Certificate Continence
Management (College of Nursing),
Certificate IV Work Place Training.
Currently enrolled ACU Master of
Nursing Research.
Extensive experience in spinal
care nursing. Currently in clinical
consultancy in continence and
wound care management for
people with a disability and
people of all ages who
experience continence issues.
Providing education at a local and
national level in the management
of neurogenic incontinence and
associated equipment prescription.
8
Winner of the 2013 NSW Disability
Industry Innovation Awards,
Emerging Leader category,
for development of 3 product
selection tools to assist health
professionals prescribe the most
suitable continence products.
The tools are available in print
or via Apple app store, Catheter
Compass™, PadNavigator™ and
DomeDirector™
Extensive experience in the field
of Spinal Cord Injuries Nursing in
senior nursing roles with the NSW
Spinal Outreach Service, Prince of
Wales Spinal Injuries Unit , the
NSW Paediatric Spinal Outreach
Service, Spinal Unit Royal Rehab
Centre Sydney and at ParaQuad
NSW. Recent experience as a
Clinical Nurse Educator Aged
Care at War Memorial Hospital.
Rita Cusmiani CNC Spinal
Certificate IV Training and
Assessment, Certificate of
Rehabilitation Nursing, Certificate
of Spinal Cord Injuries, Bachelor of
Applied Science (Advanced Nursing).
Clinical expertise in assessment
and health management of persons
who have sustained a Spinal Cord
Injury with special interest in
continence, skin management and
sexuality. Expertise in continence
equipment prescription. Experience
in facilitating and delivering
education and training.
27 years experience in the field of
Spinal Injuries Nursing, including
Clinical Nurse Consultant at the
Royal North Shore Spinal Unit
and Clinical Nurse Consultant
Royal Rehab Spinal Unit, Sydney.
Currently practicing as the part
time Clinical Nurse Consultant
Spinal/Continence at BrightSky
Australia.
6 years experience in facilitating
the Attendant and Personal Care
training for ParaQuad NSW.
Extensive experience in the
area of assessment and health
management of people with a
SCI, and in completing Care and
Continence prescriptions for various
community service providers.
Jennifer Greenaway
CNC Spinal/ Aged Care
Bachelor of Nursing (UWS),
Graduate Certificate of Spinal Cord
Injury Nursing (UTS), Graduate
Certificate Aged Care Nursing
(College of Nursing).
Louise Stevens
CNC Epidermolysis Bullosa (EB)
BSc (Hons) in Professional
Nursing Studies, Certificate IV
Work Place Training, Certificate
in Paediatric and Neonatal
intensive care nursing. Advanced
Neonatal Resuscitation course
and Workplace Clinical coaching
certificate.
Louise has presented about EB
and wound care at many national
conferences. Her articles have been
published in UK, Australian and
International wound care journals.
Two published posters shown
nationally and internationally.
Currently practicing as an expert
in EB wound care and clinical
consultancy in wound care
management for people with a
disability and people of all ages.
HEALTHSPOT
Brought to you by the
Spinal Wellbeing Service.
Autonomic Dysreflexia
Autonomic Dysreflexia (AD) is a condition that commonly affects
people with a spinal cord injury at or above T6. This condition
can be distressing and dangerous. It is important to be aware
of the signs and symptoms of AD so that management of this
condition can be started immediately. Quick management will
commonly lead to a quick resolution of AD.
What is it?
• A pounding headache
Autonomic Dysreflexia (AD) can
be caused by stimulation below
the level of the spinal cord injury.
This stimulation is generally in the
form of pain. The pain can start
an autonomic dysreflexic episode,
causing constriction of blood vessels
and a rapid rise in blood pressure.
• Flushing/blotching of skin
above the level of injury
If the cause of AD is not found
and managed, blood pressure can
rise to dangerously high levels
which, if untreated, can lead to
stroke and death.
Autonomic Dysreflexia is a
medical emergency that requires
immediate attention.
Who gets it?
It can occur in people with spinal
cord injury at or above the sixth
thoracic level (T6). AD does not
usually affect people with a
spinal cord injury below T6.
What are the signs and
symptoms?
A sudden rise in blood pressure is
always present. Other than this,
each person will show different
signs and symptoms. Some of the
things you may notice are:
• Sweating above the level of injury
• Goosebumps above the level of
injury
• Shortness of breath or
a feeling of anxiety
• Nasal stuffiness
• A slow pulse
• Blurred vision or seeing spots
What are some of the
common causes?
Bladder: The pain of having a full
bladder can commonly cause AD.
Examples of causes of a full bladder
include: a full leg bag, delaying
intermittent catheterisation, a
blocked or kinked catheter, or a
urinary tract infection. Kidney
stones can also be a cause.
Bowel: Constipation, a full bowel,
haemorrhoids or other rectal
irritations.
Skin: Pressure ulcers, burns,
in-grown toenails, or
tight clothing.
Other: Some other causes may
be fractures, sexual activity,
pregnancy, period pain,
distended stomach, or
a peptic ulcer.
What is the
treatment?
It is recommended to
always seek the latest
information on
treatment. Go to
NSW Health’s
website
and see:
Autonomic
Dysreflexia
Algorithm,
which is a
flow chart
of steps
to take to
resolve an
episode of
AD.
• Don’t
panic
• Sit up
• Find and
remove the
cause
continued next page
9
HEALTHSPOT
Nursing Practice Related to Spinal
Cord Injury and Disorders: A core
Curriculum Nelson, Zedjdlik & Love
EPVA 2011
For Bladder related causes:
• If you self-catheterise, pass a
catheter and empty the bladder
using generous amounts of
lubricant
For Bowel related causes:
• Gentle manual evacuation or
the use of an enema/suppository
may be needed if you suspect
you may be constipated
• Check that your catheter is not
blocked or kinked, or that your
leg bag is not over-full
• Use an anaesthetic gel to
lubricate the glove
• Empty your leg bag
• If necessary change the catheter,
using an anaesthetic gel at the
catheter site to numb the area
10
Should you be unable to find
and remove the cause you may
need to take your prescribed
antihypertensive medication
such as GTN as directed by you
treating physician.
If symptoms persist call an
ambulance (paramedic) and seek
medical assistance as soon as
possible
What is GTN?
Glyceryl trinitrate (GTN) is a
medication that works by widening
major arteries thereby reducing
blood pressure. This drug is
sprayed under the tongue and
can be repeated after five minutes
if the symptoms have not been
resolved. Up to three doses can be
HEALTHSPOT
given within 30 minutes. GTN is
available in the following forms:
1. Nitrolingual Pumpspray (GTN
spray)
2. Anginine tablets: ½ tablet is
given under the tongue (the
tablet should be spat out when
blood pressure settles)
3. Transdermal nitro patches:
These are applied to skin of the
chest or abdomen and should
be removed as soon as the blood
pressure settles
The main side effect of GTN is a
dramatic lowering of the blood
pressure, which can cause a
headache, flushing and/or fainting.
WARNING
Before administering GTN, always
check for recent use of medication
for erectile dysfunction. Do not
use GTN spray, tablets or patch
if viagra (sildenafil) or levitra
(vardenafil) has been used in the
past 24 hours or cialis (tadalafil)
has been taken within the past
four days.
Important Tips
Attempting to solve the problem
has the potential to worsen the
situation as it may irritate the
cause, at least temporarily (e.g.
unblocking a catheter or emptying
the bowel) so remember to take
great care when doing this.
When it is not possible to
immediately resolve the cause
of AD (ingrown toenail, a broken
bone, a burn, etc.), pain-killing
medications can help relieve pain
and therefore the AD. Keep your
GTN close to you at all times and
be aware of its expiry date. GTN
spray should be replaced three
months after first opening. It
should be stored away from heat
and sun. Remember: If symptoms
persist, call an ambulance
(paramedic) and seek medical
assistance as soon as possible.
It is important you know what
to do, as others (including some
healthcare professionals) may
not. Always carry an Autonomic
Dysreflexia Medical Emergency
Card with you as it can be a
helpful reference for other people
during an emergency. Contact
State Spinal Services, ParaQuad
NSW or SCIA for your free card.
References and Further Resources
• Ambulance: 000
• Your local doctor or spinal specialist
• Autonomic Dysreflexia Treatment Algorithm: www.aci.health.nsw.gov.au/__data/assets/pdf_file/0019/155143/
algorithm.pdf
• Treatment of Autonomic Dysreflexia for adults and adolescents with spinal cord injuries, (2002), Middleton,J, Revised 2010
http://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0007/155149/Autonomic-Dysreflexia-Treatment.pdf
• Autonomic Dysreflexia Emergency Card
www.aci.health.nsw.gov.au/__data/assets/pdf_file/0020/163442/Medical-Emergency-Card.pdf
• Video presentation on Autonomic Dysreflexia
http://www.aci.health.nsw.gov.au/resources/clinician-resources/spinal/video-presentation-on-autonomicdysreflexia
Do you want more
information on a
particular health
management strategy?
Email you request to: [email protected]
General advice will be published without taking into
account your particular situation and needs. Before
making any decisions based on information or advice
contained in ParaQuad News, explicitly or implicitly,
you should seek advice.
11
FEATURE
Japanese experts hear about
Australian Epidermolysis
Bullosa Dressing Scheme
Epidermolysis Bullosa experts in Japan hear how
Australia is bringing better access to appropriate
dressing to patients in Australia from our very
own expert.
ParaQuad and BrightSky’s
Epidermolysis Bullosa (EB) expert,
Louise Stevens presents the
Australian experience and the
anecdotal improvements to patient
outcomes since the introduction of
the National EB Dressing Scheme
(managed by BrightSky Australia)
during the recent Japanese Society
of Wound, Ostomy and Continence
(JWOC) Management conference.
Louise Stevens, Clinical Nurse
Consultant Epidermolysis Bullosa/
Wound Care for BrightSky
Australia, was recently invited
to speak at the JWOC conference
in Japan. This was no mean feat
given the language barrier and
translation requirements to make
this happen. However Louise and
a team of translators successfully
managed to translate the 60
slide presentation on Nursing
Management of EB and the
National EB Dressing Scheme (an
Australia-wide scheme making
very expensive dressings accessible
to people with EB). In addition to
the slide translation, participants
had access to headsets for a real
time translation via interpreters
during the presentation.
12
After the presentations, long
and fruitful discussions took
place with EB experts and
DEBRA Japan (Dystrophic
Epidermolysis Bullosa
Research Association in
Japan) looking at how
they could incorporate
the Australian experience
of nursing care, education
and access to dressings into
their own strategies for future
care for people with EB in Japan.
The Japanese participants were
grateful for the presentation and
time given by Louise and Professor
Katsuto Tamai (Dermatologist
at the Department of Stem Cell
Therapy Science, Osaka University)
and keen to continue to foster an
ongoing international relationship
to ensure that people with EB
across both nations can benefit
from each others learnings.
During the conference Louise was
also asked to provide feedback
on four seminar presentations
by medical students who were
presenting in English for the first
time. This was a great honour
for both the medical students
and for Louise.
For detailed information about
EB, including research papers,
wound dressing education
and links to national and
international organisations,
please visit the National EB
Dressing Scheme website
www.ebdressings.com.au
For further information about
EB and its support and research
group in Australia DEBRA
(Dystrophic Epidermolysis
Bullosa Research Association),
visit www.debra.org.au
13
TRAVEL
By ParaQuad Member and Freelance Journalist Allan Sams
Allan Sams is a ParaQuad member and freelance journalist who recently
returned to the Orana region of western NSW. He had not been back to
the region for many years, but things have changed and all for the better.
Dubbo, still the friendly locals and
cold beer however the centre of the
Central West region has morphed
into an inland oasis, with broad
shady streets, a wheelchair friendly
mall that would make a capital city
proud and a sense of history still
lingering around the banks
of the Macquarie River and the
many historical sites around
this bustling city.
For those interested in the legal
history of Dubbo there is the
Classical Victorian Dubbo Court
House, complete with the original
wood panelling and fittings
(and the addition of wheelchair
access). In many cases criminals
would have ended up in another
Dubbo landmark, the Old Dubbo
Gaol, around the corner from
the Courthouse. This chilling
reminder of our more brutal past,
was thought to be built in 1871
and continued as a gaol till 1966.
Walking, or wheeling – the whole
site is wheelchair friendly - into the
14
huge wooden doors is like entering
another world. To discover the
real experience of prison life, take
one of the guided tours available
at the gaol. A staff member can be
provided if assistance is needed.
The Twilight Tour is especially
good, with visitors able to watch
out for the resident ghosts!
No visit to the Central West would
be complete without visiting the
Western Plains Zoo, which is
located south of Dubbo, around
fifteen minutes from the CBD.
The Zoo is big, so allow enough
time to visit all the animals, or you
can book an early morning walking
tour. This is a fabulous way to
see the collection of rare and
endangered wildlife. A later start
is available for keeper talks, so you
can see a koala up close, feed a
giraffe, enjoy a meerkat encounter
and learn more about this dynamic
tourist attraction. Both these tours
can be booked, let the staff know
that you use a wheelchair and they
will ensure you get around safely.
The Zoo is reportedly the next best
thing to viewing animals in the
wild, as you drive, walk or wheel
around the one way sealed 6 km
circuit. Bicycle and electric safari
cart hire is available or you can use
your own mode of transport to get
up close to the animals.
You will find excellent disabled
access to all the exhibits, the
café and resource area as well as
TRAVEL
Getting there:
Regional Express and
Qantas operate from Sydney
to Dubbo using SAAB and
Dash 8 aircraft. Check with
the airlines on their policy for
travellers requiring assistance
when you book.
CountryLink also operates a
daily train service from Sydney
to Dubbo and when booking,
let them know that you use
a wheelchair as there is an
accessible carriage with easy
access to toilet facilities on
board.
Driving from Sydney to Dubbo
will probably take around five
to six hours.
accessible toilet facilities scattered
throughout the zoo.
Another must see, if you are
interested in culture and the arts,
is the Western Plains Culture
Centre, located just minutes from
the CBD. Entry to the Centre is
free. This award winning facility
weaves together Dubbo’s past and
present. The art gallery is said to be
the largest west of the ranges, with
more than 700 square metres of
display space. The centre has good
wheelchair access and facilities, so
be sure to plan a visit.
Take a thirty minute drive east
of Dubbo to the bustling town of
Wellington, with its wide streets and
extensive parklands, which sits at
the foot of Mount Arthur.
The Wellington Caves complex, ten
minutes east from town, are a great
tourist attraction. The Caves cannot
host wheelchair visitors, but there
is an adjacent phosphate mine with
good access.
There are three disabled
accommodation properties
within the Dubbo area and two in
Wellington. Check with the friendly
team at the Dubbo Information
Centre, or at the Wellington Tourist
Information Centre for more
detailed information.
I booked online and stayed at the
Walls Court bed and breakfast,
which is close to the Western
Plains Zoo. This four star B&B
is arguably the best disabled
accommodation I have experienced.
Fresh strawberries and yoghurt in
the fridge, fresh homemade bread,
an enormous bathroom and shower
set up and comfortable beds at
the right height. Visit their website
for a closer look and you can book
on-line. (www.wallscourt.com.au)
Accommodation at
Western Plains Zoo
The recently upgraded
Zoofari Lodge has 10 new
African inspired lodges
including an accessible
lodge, featuring a ramp for
access, king bed and sofa
bed, wide doorways and
fully compliant wheelchair
accessible bathroom. The
lodge can sleep up to four
guests.
Alternatively there is the
Savannah Cabins - self
contained accommodation, .
One cabin is equipped with
disabled access including
an accessible bathroom and
access ramp.
Private cottages, country hospitality
Relish the tranquility and
comfort of your Walls Court
suite as you laze on the
veranda observing the
birds in the garden.
Revel in crowd free shopping precincts
or savour the wine tastings and regional
cuisine at nearby wineries. Explore
attractions yourself or take advantage of
our familiarity with the area. Learn a new
craft by making a pair of silver earrings
for a small
additional
cost.
Watch the joy your children have
feeding chooks, patting dogs and
gathering eggs. Gain more from your
visit to Western Plains Zoo; we are
volunteer guides.
Eftpos available. All
credit cards accepted
Your hosts are Neil and Nancy Lander
11L Belgravia Heights Road, Dubbo, NSW 2830
Tel: 02 68873823 Email: [email protected]
Website: www.wallscourt.com.au
15
FEATURE
Tony showing Robyn, a
ParaQuad staff member,
the garden produce
Lions Club assists
Ferguson Lodge residents
In February 2014 the Sydney
Markets Lions Club, a long time
supporter of ParaQuad NSW,
made a generous donation to
ParaQuad to assist residents
at ParaQuad’s accommodation
facility in Lidcombe – Ferguson
Lodge. In collaboration with Cherry
Cameron, the Accommodation
Manager, it was decided to
purchase wheelchair accessible
garden beds with the funds
donated by the Lions Club. Many
of the residents have had gardens
in their own homes prior to their
injury and/or coming to live in
Ferguson Lodge.
The six garden beds are in the back
garden area near a fountain and
BBQ area with plenty of room to
navigate around and between the
garden beds. The Ferguson Lodge
gardener, Bill, purchased and set
up the garden beds ready for the
residents to plant, weed, harvest
and till the soil and ultimately
enjoy the “fruits” of their labour.
Apart from the enjoyable activity of
gardening, the garden is producing
spinach, leeks and lettuce with the
intent of planting more vegetables
and herbs to supplement the
kitchen pantry.
Cherry Cameron, Ferguson Lodge Accommodation
Manager and Charlie Tutty BrightSky’s National
Sales Manager accepting a donation cheque from
Ray Lawler, Treasurer Sydney Markets Lions Club.
Tony is keen to
enjoy the gardening
experience thanks to
The Sydney Market’s
Lions Club
Ferguson Lodge resident – Tony is
a keen gardener and is overjoyed
at the prospect of being able to
get his hands dirty in the “new”
garden beds and grow vegetables.
Tony grew up on his family
owned market garden in Quakers
Hill so gardening is in his blood.
Gardening is something he has not
been able to easily enjoy since he
acquired his spinal cord injury 10
years ago.
ParaQuad would like to thank the
Sydney Markets Lions Club for
providing financial assistance and
making gardening a possibility for
the residents at Ferguson Lodge.
17
FEATURE
2015 Scholarship Program
Providing education assistance to people with a spinal cord injury
The ParaQuad NSW Scholarship Program provides people who have a
spinal cord injury the opportunity to study, retrain and obtain skills for
future employment. The 2015 scholarship applications will be available
from November 2014.
With financial assistance of up to
$5000, the scholarship program
supports educational pursuits at
an accredited institution as well
as assistance to pursue a sporting
career.
• have a high level of academic
record
To be eligible for a scholarship,
applicants must:
The scholarship program can assist
with funds to cover the following
costs:
• be an Australian Citizen or
Permanent Resident (residing in
NSW/ACT)
• have a spinal cord injury
Emily, a 2014 scholarship
recipient says...Receiving a
Paraquad Scholarship has
assisted me in my return
to university following my
accident in 2012. My aim is
to complete the Graduate
Diploma of Psychology at
The University of Sydney
with the intention of
completing higher degree
studies to become a
clinical psychologist.
• demonstrate motivation and
perseverance towards goals
• be or become a member of
ParaQuad NSW
• Education/course fees for one year
• Course excursion funds or
residential expenses
Peter, a scholarship
recipient for the past 2
years is undertaking a
Masters of Fine Arts at
Sydney University. His
thesis is on the effects
of art therapy for people
with a spinal cord injury
and one day may allow
him to continue a career
in teaching art.
• Carer’s allowance contribution
• Hardware and tools assistance
(such as scribes and typing
services)
• Computer system (hardware and
software required for the course)
• Introductory computer use
training (tailored to the specific
needs of the individual)
• Textbooks and supplies
• Additional supporting tuition
Samia, a scholarship
recipient for the last 2
years is able to use her
scholarship funds to
assist her to continue
with her Bachelor of
Science - Psychology.
For more information
Visit ParaQuad website: www.paraquad.org.au • email: [email protected] • Phone: 02 8741 5669
19
FEATURE
NDIS one year on...
The National Disability Insurance Scheme (NDIS) has recently reached
the first anniversary since the NSW trial in the Hunter began. This
means that most if not all individuals that have been deemed eligible
to receive supports and that reside in the Newcastle LGA have now
entered as Participants of the Scheme.
Year two has now commenced
with Lake Macquarie the next
Local Government Area (LGA) trial
site. This area will present a new
set of challenges for the National
Disability Insurance Agency (NDIA)
as it is a significantly larger LGA
however now that the NDIA have
established their employee base it
is anticipated that the transition
of individuals into the NDIS will be
done in a timely manner.
To date the Hunter Branch of
ParaQuad NSW has assisted over
20 individuals in numerous aspects
of the NDIS including:
• General information
• Guidance and support in
accessing the ”My Access
Checker” on the NDIA’s website
• Pre-planning support and
guidance
• Attending and providing support
during planning appointments
with the NDIA
• Advice and guidance on the
supports received with their
Plans
• Provision of direct supports
as chosen by the Participant.
The feedback we have received
and are continuing to receive from
Participants is overwhelmingly
positive with most reporting at
least a moderate enhancement
of supports.
Historically an individual’s level
of support prior to the NDIS has
varied as people were required
to know what Government
assistance was available and which
Government agencies to liaise with.
Different funding arrangements
had a variety of access criteria and
some had co-payment or annual
20
participant charges as part of the
funding. Working with one agency
has streamlined the process for
individuals and has aligned the
majority of funding into one place.
The feedback we
have received ...
from Participants is
overwhelmingly positive
... reporting at least a
moderate enhancement
of supports.
In addition to the benefits of
liaising with a single government
agency, additional supports
are available for people with
paraplegia that historically have
not been available, for example
people with paraplegia prior to
the NDIS were generally only
eligible for:
• CAPS (Continence Aids Payment
Scheme) funding, total value
capped at $533 indexed
annually
• Enable funding for equipment
and possibly continence,
attracting an annual $100
Co-Payment fee
• Possibly may be able to receive
domestic assistance through
Home Care, average hourly
co-payment charge $10.00
Additional funded supports
that are potentially available to
a Participant of the NDIS for a
person with paraplegia all with
a nil co-payment include:
• Total funding support for
continence items relating to
their evidence-based need
• Clinical Continence Assessment,
if this has been identified as
needed,
• Equipment/maintenance (and
OT Assessment if identified as
required) within their NDIS plan
• Household supports/domestic
assistance
• Support with shopping if needed
• Yard Maintenance including
gardening/mowing depending on
Participants type of residence
• Vehicle Modifications, primarily
hand controls for a Participant
with paraplegia
• Home Modifications if needed
• Social Support, if identified as
needed and or requested within
the Planning process
It is important to consider this
opportunity at any level of SCI
and we encourage anyone that is
either about to transition in Lake
Macquarie or still possibly unsure
whether they may be eligible to
receive support under the NDIS to
either contact ParaQuad or their
current provider. The evidence we
have received to date is this will help
provide the best possible outcome
within your Plan of supports!
If you live in the
LGA sites and would
like to become a
participant in the
NDIS, contact our NDIS Program
Manager, Grant Roulstone on:
Tel: 02 4969 6388 or Email:
[email protected]
Website: www.paraquad.org.au
NORTHERN REGION UPDATE
Grant
wins Gold!
Introducing one of ParaQuad’s members, Grant Nickel, who has also
helped out with our recent Northern Region Hand Cycling Come and
Try day and also competes in the National Para-Cycling championships.
Grant sustained his C6 spinal
injury approximately 30 years
ago whilst riding his bicycle. Two
years ago, a couple of wheelchair
rugby friends encouraged him
to try handcycling as they were
also handcyclists themselves. In
Grant’s words “they knew I liked a
challenge and to exercise regularly
and they were guessing that
handcycling would be a perfect
fit. They guessed right!”
Each year Cycling Australia
holds the National Para-cycling
Series. The series is comprised
of four rounds, each is held
in a different State around
Australia. The final round is the
National Championships and is
the pinnacle of road racing for
para-cycling in Australia. For the
National Championships, well
over a hundred people with vastly
different disabilities converge on
Echuca, a beautiful country town
in Victoria to participate.
Depending on the level of
someone’s injury or physical
ability to participate, each rider is
assessed and given a classification.
Grant is in the H1 classification,
which is for riders that are C6 or
have less function. This year he
received a silver medal for the
time trial, a silver medal for the
road race and gold medal for the
2014 series as he finished top of
his classification in the series.
H1 is a newly introduced class in
2014, which has given riders with
limited triceps the opportunity to
22
be competitive at an international
level for the first time.
Classifications for handcycling are:
H1
C6 quadriplegia with limited
triceps
H2
C7/C8 quadriplegia with triceps
H3
T1–T10 paraplegia
H4
T11 or below paraplegia
H5
T11 with trunk stability (or similar
disability) must ride in an upright/
kneeling position.
Those classified H1 through to H4
ride in a recumbent or lying down
position and H5 are required to
ride in the kneeling position.
The range of disabilities that are
able to participate include riders
with vision impairment through to
double above knee amputations.
As each disability manifests itself
differently and gives people a
different range of abilities there are
a large range of cycles used – in
Grant’s words “every incarnation
of cycle imaginable”, from tandems
with sighted pilots, trikes for those
with muscular tremors and for
people with spinal cord injury (or
similar disability) we make up the
handcycling category.
While Grant acknowledges he does
not train as often as he would like,
he generally trains at least every
second day. A typical training
session would equal between 30 to
40km. Grant trains at a cycle track
not too far from where he lives and
most of his riding is done there
(as Grant feels it is much safer
than taking on traffic), however
he will go on longer rides where
this involves cycling on the roads.
While Grant will tell you “It’s not
for the faint hearted” he makes
every effort to minimise risk by
mapping out a sensible route and
having his lights front and back
blazing with his fluoro flag
waving away!
What Grant loves about
handcycling above anything else
that he has done before is that
it can be whatever you want it
to be. Whether you want to ride
for recreation or get a bit more
serious and compete, handcycling
accommodates this perfectly. It’s
not too hard to keep up with other
family and friends when you go out
for a leisurely cycle and if you’re
up for a challenge, competitive
handcycling is not to be feared
as it is equal parts socialising
and participation. However Grant
gives this warning to all that are
considering “giving it a go”, once
bitten by the cycling bug it has a
way of taking over, from getting
the right handcycle, to setting
yourself new goals each week it
fast becomes a passion to ride off
towards the horizon!” Like any
“exercise junkie” will admit, when
you find a sport or activity you
enjoy - its very addictive.
Christmas
in July
Members of the ParaQuad Northern
Region branch attended ‘Christmas
in July’ at Belmont 16 Footers Sailing
Club. We enjoyed upbeat music from
our talented music tutors Ron and Lucy
who entertained us with tracks from
the 60’s and 70’s. For all who attended
we hope you enjoyed yourself, we
found it a lovely opportunity to have a
chat and a festive catch up with you.
Social night
It was a night of laughs, dancing and singing when members of the
ParaQuad social group in Newcastle visited the Kavon Theatre Theme
Restaurant. After our delicious meals we were entertained with amusing
song and dance numbers with the performers of the show and entertaining
wait staff encouraging guests to sing along and join in on the fun.
Cooking up a storm
Recently a number of ParaQuad members visited the
Essential Ingredient in Newcastle to learn how to make
and happily sample a series of delicious healthy dishes.
On the menu was fresh hommus and vegies, Mexican
beef with avocado salsa and a mouth watering fresh
apple crumble. The talented chef shared interesting
cooking tips and we learned that one teaspoon of spice
is never enough! Sampling the dishes was a highlight
for many with the main of Mexican beef being a sure
fire favourite amongst the group. Due to popularity,
these cooking classes will be held monthly with the
next class being held on the 11th of September at
Cameron Park Community Centre. Please ensure to
RSVP to Community Development Officer Melanie
Lloyd for more information or to register your interest
as numbers are limited.
Guitar, drum and
harmonica lessons
Each Monday at 11.30am members of the
ParaQuad Northern Region branch meet
for some musical fun with free guitar
and drum lessons for people who have
a physical disability, carers and friends.
This session takes place every Monday at
11.30am. Our fabulous tutors encourage
all skill levels to attend and enjoy the
experience of learning a new instrument
whilst taking part in some social musical
fun. If you are interested in joining please
contact Melanie Lloyd, Community
Development Officer, Ph: (02) 49696388
Email: [email protected]
23
Social Group Calendar
SEPTEMBER
OCTOBER
4
NOVEMBER
2
Go-Karts
When: Thurs 4 Sept
Where: Go-Karts-Go
Cnr Griffiths Rd and Turton Rd
New Lambton
Time: 10.30am to 12pm
Cost: $20
11
7
Lawn Bowls
When: Thurs 2nd Oct
Where: Charlestown Bowling Club,
5 Lincoln St, Charlestown
Time: 10:30 am to 11:30 am
Cost: FREE
11
Hands On Cooking Classes –
Practical
When: Thurs 11 Sept
Where: Cameron Park Community
Centre107 Northlakes Drive,
Cameron Park
Time: 10.00am to 12.30pm
Cost: $15
18
When: Thurs 18 Sept
Time: 10:30 am to 11:30 am
Cost: FREE
Shooting
When: Sat 11 Oct
Where: Newcastle Air Rifle Club
54 Eldon St, Waratah West
Time: 11am
Cost: TBA
17
Archery
When: Friday 26 Sept
Where: Newcastle City Archers,
Time: 2.00 pm to 4.00 pm
Cost: $20
Lawn Bowls
When: Thurs 13 Nov
Time: 10:30 am to 11:30 am
Cost: FREE
20
When: Friday 17 Oct
Time: 2.00 pm to 4.00 pm
Cost: $20
23
26
When: Friday 7 Nov
Time: 2.00pm to 4.00pm
Cost: $20
13
Archery
Lawn Bowls
Archery
Hands On Cooking Classes Practical
When: Thurs 23 Oct
Centre
107 Northlakes Drive,
Cameron Park
Cost: $15
Hands On Cooking Classes Practical
When: Thurs 20 Nov
Centre107 Northlakes Drive,
Cameron Park
Cost: $15
27
Lets set Sail
When:
Where:
Time:
Cost:
Thurs 27 Nov
Grahamstown Dam, Medowie
10.30am
$6 per person
For more information or to RSVP please contact Melanie Lloyd, ParaQuad Community Development Officer on Ph: (02) 49696388
Email: [email protected]
SAVE THE DATE
Newcastle
Christmas Party
When: 12 December 2014
Where: Speers Point Park, Speers Point
Time: 12.30pm to 2.30pm
24
Come help us
celebrate the
Christmas spirit in
true Aussie style
with a Christmas
BBQ Sausage
Sizzle on us.
High aimers at archery
During this month members tested
their talents at the skilful sport of
wheelchair archery at Newcastle
City Archers in Waratah. We were
kindly assisted by Archery Coach
Steve Jordan and four of the club’s
friendly members who were quite
impressed by how fast the group
picked up this activity. Due to
the popularity of this activity we
repeated this again late August.
Club Coach Steve Jordan states ‘It
was very surprising to see that after
only a small number of arrows
shot, everyone had picked up the
idea of how to shoot consistently
and accurately. The results over the
next 2 hours were very impressive
and matched, or in some cases
exceeded, the performance of the
participants of the Club Come &
Try Day the week before. The four
club members who assisted on the
day had a great time passing on the
skills of the sport.’
For people wishing to pursue this
sport, Steve Jordan shares with us
a few useful information.
Are there specific requirements
for participants in wheelchairs for
this sport?
No, none at all. All that is required
is the ability to shoot the bow in
a safe manner
– same as for
anybody else.
Are there
opportunities for
people who use
a wheelchair to
progress in the
sport?
Yes, whilst
this particular
club does not
hold specific
competitions or
championships,
nearly every
weekend there
is a State
competition on somewhere –
usually the Sydney area – so if
people are interested, they can
travel to other clubs to compete.
There are Divisions and Age
brackets so that everyone can
compete on an equal basis.
Are there any particular aids
that people can use to who have
limited joint mobility?
Yes however this depends
on what is needed for the
individual person.
Archery Adaptions:
Some common adaptions include
mouth tabs, slings and shoulder
straps. Mouth tabs are particularly
useful for an archer who can only
use one arm. They enable a shooter
to steady the bow and pull the
string back with their mouth. A
crossbow mount can also be used
for people who have very little or
no arm function as can a crossbow
cocking device. For archers with
significant upper extremity disability
a device to secure the bow such as a
universal cuff or tie can be used.
Rev up your engine this November as part
of Spinal Cord Injury Awareness Week
On Saturday the 22nd of November
2014 there will be a ride to support
the Northern Region Branch
to raise funds for ParaQuad to
continue to support people who
have a spinal cord injury or
physical disability.
Sadly motor vehicle and traffic
related accidents account for more
than half of all reported spinal
cord injuries in Australia and
motorcyclists represent up to
79% of these.
Most spinal cord injuries are
permanent and life changing.
It can take over a year before a
person can leave hospital and
the journey is not easy. Finding a
new and accessible place to live,
seeking assistance with everyday
living activities they used to take
for granted, such as getting out
of bed, showering, and shopping,
not to mention the ongoing health
impacts and social adjustment
which impacts the person as well
as their friends and family.
If you are interested in participating
in this ride we will assemble at
Homesville Hotel at 11:00am for a
11:30am start. The ride will take us
through the scenic Hunter Valley
and after a few stops along the
way we will return to Homesville
Hotel at 2pm for a well deserved
sausage sizzle and afternoon of
entertainment and raffles.
For more information please
contact Melanie Lloyd, ParaQuad
Community Development Officer
on Ph: (02) 49696388 Email:
[email protected]
or visit The Hunter Bikers Events
Listing Facebook page
www.facebook.com/groups/
hunterbikerseventslisting/
25
EVENTS
Spina Bifida Awareness Week
1st – 7th September
Every year Spina Bifida Awareness week
aims to promote the ability, achievement
and inclusion of children, young people
and adults living with Spina Bifida.
Spina Bifida describes a group of
spinal abnormalities that occurs
within the first four weeks of
a pregnancy when the baby’s
developing spine (neural tube) fails
to close properly. The name comes
from the Latin term meaning
“split spine”. Spina Bifida is the
incomplete development of:
• The spinal cord
• The bones forming the spinal
column (vertebrae)
• The overlying skin.
The Agency of Clinical Innovation
funded a project these past 12
26
months to develop resources for
people living with Spina Bifida
and their families. The Children’s
Hospital at Westmead, Sydney
Children’s Hospital, Randwick,
the Spina Bifida Adult Resource
Team (SBART) at Northcott and
Kaleidoscope Children, young
people and families have worked
together to create 26 factsheets
addressing important health and
social issues people living with
Spina Bifida face.
These resources are available for
free to download in PDF and HTML
at http://www.schn.health.nsw.gov.
au/parents-and-carers/fact-sheets
For further information about
Spina Bifida or to make a clinic
appointment contact.
The Children’s Hospital at
Westmead - (02) 9845 2769
Sydney Children’s Hospital at
Randwick - (02) 9382 1595
Kaleidoscope Children,
Young People and Families (02) 4925 7868
Spina Bifida Adult Resource
Team (SBART) - (O2) 9472 5215
EVENTS
Spinal Cord Injury Awareness Week
9-15 November 2014
ParaQuad NSW as a member of the Australian
Spinal Injury Alliance will be supporting Spinal Cord
Injury Awareness Week with a national campaign to
raise awareness of the four major causes of Spinal
Cord Injury.
During this week we will be conducting a number
of online initiatives which we would like you to
participate in to help raise awareness.
2014
Any members that would like to share their story to
please send these through as we will be compiling
a number of media releases and we want NSW and
Australia to hear from real people living with a
Spinal Cord Injury.
ParaQuad NSW will be
holding Wheels for a Day
for the entire Spinal Cord
Injury Awareness week. This
year ParaQuad NSW will
be approaching businesses
within NSW to participate in
Wheels for a Day.
work in their office or place
of doing business if they
were in a wheelchair. Create
some buzz and see which
department can raise the
most funds for ParaQuad and
join in the spirit of giving
while you are there!
Wheels for a Day provides
leaders and employees an
opportunity to experience
what it would be like to
If you or a friend wants to
find out if ParaQuad can come
to your business contact
Elke Schreiner 8741 5627.
Saturday 29 November 2014
Walk, Run, Ride or Roll starts
at 8am from meeting points in
Newington, Wentworth Point and
Sydney Olympic Park.
The Festival of All Abilities starts
at 9am at Newington Armory
Wharf.
• Guest speaker, one of
Australia’s most successful
athletes, Louise Sauvage OAM
• Performances by The Arcade
Circus and the Special Olympics
dance troupe
• Interactive wheelchair
sports demonstrations from
Wheelchair Sports NSW
— give it a go!
• Breakfast BBQ
• Children’s craft
• Free Bike Health Check from
Park Bikes
For more information contact:
Auburn City Council Community
Development officer, Anita
Ceravolo on 9735 1378.
A community celebration for
National Inclusion Week and
International Day of People with
Disability.
27
EVENTS
An initiative of Lifestart
Lifestart launches Online Inclusion at the Opera House
The Online Inclusion
platform, “Oi” is a
collaborative notfor-profit approach
to providing
information on
disability via a
unique online
support platform.
Oi is an initiative of Lifestart,
a disability organisation which
provides early intervention
services to families and children
living with disability. Oi provides
one of the most up to date
collective approaches to providing
information and resources on
disability in Australia.
On the 28th July 2014 Oi was
officially launched by The Hon.
Malcolm Turnbull MP, Minister for
Communications at the Sydney
Opera House. As part of the launch
the Nordoff-Robbins Music Therapy
Fergie and Friends Choir performed
a medley of iconic Australian
songs. The Fergie and Friends choir
is made up of residents and friends
of ParaQuad’s Ferguson Lodge. Sue
Holohan, a long term Ferguson
Lodge resident and choir member
entertained the audience with
a solo rendition of “I Dreamed a
Dream” from Les Miserable.
Oi aims to support people living
with disability, their families
and carers, clinicians and
educators, people from diverse
backgrounds and those in rural
and remote locations by offering
a structured and informal online
support platform for people with
a disability who are isolated and
concerned about where to go
for information. There are over
65 organisations from across
Australia (including ParaQuad
28
Paraquad News • sePTeMBer 2014
photo supplied courtesy of Lifestart
NSW) partnering with the project
to ensure accurate information
and resources can be accessed.
ParaQuad staff members, Robyn
Ryan, Wendy Harris and ParaQuad
Board member, Mark Tonga are
Oi Ambassadors. As Ambassadors
they will support and promote Oi
and help get the word out to people
living with a disability and the
wider community of its value as an
information and support resource.
As an online hub, Oi offers a secure
platform for people in regional
and remote areas to access
information, online therapy
and support.
Suzanne Becker, the CEO of
Lifestart, says, “Whether you are
a person living with a disability,
family member, carer or a person
working in the field, Oi can provide
support, access online group
sessions and much more. Our
aim is to ensure that people living
with a disability can be included
in all types of activities, work and
community events.”
Other services that will be provided
by Oi include social networking,
chat opportunities, a creative
resource centre, online therapy
and record management.
photo supplied courtesy of Lifestart
Oi provides information and
fact sheets as well as the ability
to host online group sessions,
online therapy, workshops and
e-learning in a safe and accessible
environment for all Australians.
“This is an exciting initiative which
will ultimately empower people
to make better informed decisions
about their support options,” said
Suzanne Becker.
Oi is supported by The Trust
Company, part of Perpetual
as Trustee.
ANNUAL REPORT
Review of ParaQuad NSW
Operations
The Board is pleased to report to members that the surplus for
2013/14 is $1,296,012. The major contributing factors for this
significant result have been the strong performance of our social
enterprise, BrightSky Australia, both in product sales and in servicing
the DVA equipment contract; significant donor support; and strong
accommodation income from the villas at Ferguson Lodge.
The excellent surplus generated
has provided the essential funding
to continue to deliver critical
services not adequately funded by
Government such as the Spinal
Wellbeing Service. We continue
to seek additional funding from
the State Government (Health
Department) although with no
success to date. Despite claims
that the NDIS will assist in meeting
these funding gaps we have yet
to evidence this, while demand
for support services continues to
exceed resources available resulting
in a long waitlist and delays before
services can be provided.
A significant structural change this
year has seen the establishment of
a combined Marketing Department,
which incorporates the functions
of public relations, marketing and
fundraising. This new department
combines some of the activities
from the former BrightSky
Australia Marketing Department
and the Community Relations
Department and has a focus of
marketing the organisation in line
with the significant changes arising
in our sector from the introduction
of the NDIS. The higher degree
of choice by participants in the
scheme means that ParaQuad
needs to ensure that its capabilities
for service delivery, products and
equipment provision are broadcast
to the wider community. In
line with the importance of this
function the department reports
directly to the CEO.
30
In addition two other important
structural changes occurred this
year. The Mobility and Functional
Support Department (managing the
DVA contract) was incorporated
into BrightSky Australia as was the
Learning and Development group
thereby bringing all the revenue
operations under the BrightSky
banner. All clinical support
previously undertaken in BrightSky
was transferred to the Community
Services division to maximise
the use of these scarce resources
and to eliminate inefficiencies of
maintaining clinical governance
requirements across the
organisation.
Ferguson Lodge is fully operational
in both the new full care facility
and in the ten two bedroom villas
with the occupancy rate high from
both long term and transitional
residents availing themselves
of this unique accommodation
facility.
Much of our focus in the
Attendant Care program has
been in transitioning clients in
the Hunter region trial site into
the NDIS as well as for the rest
of the State transitioning clients
from the ADHC Attendant Care
program into the new Community
Support Packages (CSP). The CSP’s
are intended to be very NDISlike, making for what is hoped
a smoother transition once the
NDIS is rolled out throughout the
rest of NSW. We continue to be
concerned with the lower rates of
payment for personal care services
under the NDIS compared with
the previous ADHC rates and have
made representations to NDIS as
have many other providers. We
are of the view that the current
rate is inadequate to maintain
a well trained and qualified
workforce and does not adequately
compensate for the person centred
demands required of this support.
Of some significance has been the
collaborative involvement of the
other Australian spinal related
organisations in the newly formed
Australian Spinal Injury Alliance
(ASIA). The Alliance, which
was formed last year, has been
collaborating to ensure that Spinal
Injuries Awareness Week assumes
even greater national prominence.
It has identified specific areas of
collaboration for representation
to both State and Federal
Governments. A formal national
launch is planned in
the near future.
The Board is grateful for
the continuing support we
receive from sponsors, donors
and funding bodies and in
particular recognises and thanks
management and staff for their
hard work in delivering such a
strong financial result this year
and for the high quality services
delivered to the spinal cord
injured community and beyond.
ANNUAL REPORT
INCOME STATEMENT
FOR THE YEAR ENDED 30 JUNE 2014
CONSOLIDATED
2014
$
Revenue
2013
$
53,950,323
52,082,782
Cost of Sales
(34,838,980)
(33,534,975)
Employee Related expenses
(14,512,275)
(14,620,771)
Operating and Administration expenses
(2,947,679)
(2,886,032)
Other Expenses from Ordinary Activities
(355,377)
(429,836)
1,296,012
611,168
0
0
1,296,012
611,168
2014
$
2013
$
Cash assets
7,190,334
5,624,879
Receivables
3,166,679
3,421,068
Inventories
2,457,163
2,200,269
Financial Assets
3,363,643
2,979,748
208,956
213,713
16,386,775
14,439,677
Property, plant and equipment
5,302,101
5,245,189
Total non-current assets
5,302,101
5,245,189
21,688,876
19,684,866
8,323,674
7,974,576
Profit/(Loss) before income tax
Income Tax Expense
Net profit/(loss) after income tax expense
PARAPLEGIC AND QUADRIPLEGIC ASSOCIATION OF NSW
BALANCE SHEET
AS AT 30 JUNE 2014
Current assets
Other current assets
Total current assets
Non-current assets
Total assets
Current liabilities
Trade and Other Payables
Short Term Provisions
798,805
742,193
Short Term Borrowings
0
0
Total current liabilities
9,122,479
8,716,769
137,833
136,853
0
0
137,833
136,853
9,260,312
8,853,622
12,428,564
10,831,244
Non-current liabilities
Long Term Provisions
Long Term Borrowings
Total non-current liabilities
Total liabilities
Net assets/Total equity

- Paraquad

Transcription

Similar documents

saturday june 11th - Walking With Anthony

Plisic, Ljiljana

The study of nerves and nervous tissue

Fibrocartilaginous Embolic Myelopathy (FCEM) in animals

Connect – Winter 2013 - Spinal Cure Australia

10_CALZA [modalità compatibilità]

Spinal Cord Rehabilitation Program – Lyndhurst Centre

The Research that Validates Advanced BioStructural Correction

2015 Thank You Lunch

2009 Newsletter 4