Inform issue 22 – Autumn 2017

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In this edition of Inform we celebrate people out in their communities. We meet John who shares with us his determination which resulted in a new creative direction.

Works of heart Loving life in Mexico SpinChat

AUTUMN 2017


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Welcome

Going

further

together

This Autumn 2017 edition of Inform

celebrates people out there in their

communities. In our feature story,

John shows how his determination

resulted in a new creative direction,

and has led to more opportunities

for him in his community.

Matt and Estelle’s story is one that reflects

a couple’s success in shaping their future,

and how a supportive employer, their own

determination, and the National Disability

Insurance Scheme (NDIS) led to a big

passport stamp in Central America!

The importance of supporting people

to explore their career/family, creative,

social, and sporting options has always

been part of Independence Australia’s

core purpose. With the transition of

an increasing number of our clients to

becoming participants in the NDIS, the

support we give to enable people to make

informed and positive choices in their

lives becomes more and more relevant

to the aims of the national scheme.

We want to hear more from

people that we support, and people

who support them. If you have a story

about your independence, contact us at

theteam@indepedendenceaustralia.com

Richard Burn

General Manager Community Solutions

4 Disability Sport & Recreation Festival

5 Polio Day 2016

6 Daddo Charity Golf Day 2016

7 Calendar

8 Feature

14 Beach Access Update

16 Travel

18 SpinChat

20 Spina Bifida Foundation

21 What’s Out There Day

22 Psychology Services

24 Men’s Wellbeing

25 Featured Product

26 NDIS

27 Polio Perspectives

34 Victorian All Abilities State Netball

35 Diamond Valley

Basketball Association

Managing Editor

Lachlan Hodgson

Editor

Nicole Tattersall

Art Direction

T-world

Sub-editor

Sarah Halfpenny

© Copyright Independence Australia 2017. No part of this publication may

be reproduced without the written consent of Independence Australia.

No responsibility is taken for accuracy of information. Opinions published

in Inform are not necessarily those of the publication’s team.

Autumn 2017

3


Disability Sport & Recreation Festival

Go your

own way

On a warm and bright summer’s

day along the beautiful Crown

Riverwalk, the Independence

Australia team attended the recently

held annual Disability Sport &

Recreation Festival (DSR).

Each year, the festival coincides with International

Day of People with Disability, and welcomes

thousands of people of all abilities who come

along to engage in and learn about what

sport and recreation opportunities are out

there for those living with a disability.

The Independence Australia team asked the

question, “What does independence mean to you?”

Answers varied, from people acknowledging that

it’s something they take for granted, to those who

interpret it as being in control of their own life.

Those interested in finding out more about what

Independence Australia offered were provided

with information about the camps, day trips,

personal recreation and community access

programs, and volunteering opportunities.

To find out more about the Independence Australia recreation

program, email services@independenceaustralia.com

For further information about the festival visit www.dsrf.org.au

4

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Polio Day 2016

60 years on:

a vital vaccine

in Victoria

Independence Australia

and Polio Network Victoria’s

annual Polio Day acknowledged

a significant milestone in the

condition’s history this year.

Sixty years have passed since Victoria first

received the polio vaccination and halted the

spread of the virus. More than 100 people attended

the inaugural event, held at the Arts Centre in

Melbourne, on Saturday, 22 October 2016.

Eminent scientist and research biologist, Sir

Gustav Nossal AC, CBE, officially opened

Polio Day, which also featured guest

speakers, including global advocate Ramesh

Ferris, Bill Jarrard who is the Canadian

polio survivor and co-founder of Mindwerx

International, and local MP Frank McGuire.

The theme of 60 years was a central focus

throughout the day as guest presenters

shared their experiences with fellow

survivors and their supporters. Fran Henke,

Secretary of the Mornington Peninsula Post-

Polio Support Group, was the Master of

Ceremonies. Fran is one of the survivors who

was diagnosed with the condition in 1946.

A big thank you to Sir Gustav Nossal AC, CBE,

the Polio Day Committee, and Independence

Australia’s Marketing and Community

Solutions teams for their commitment to

ensuring Polio Day 2016 was a success.

Autumn 2017

5


Daddo Charity Golf Day 2016

Hit me

with your

best shot

A mix of golf enthusiasts and

beginners joined Independence

Australia for its annual Daddo

Charity Golf Day on Friday,

25 November 2016.

On arrival at Fingal’s world-class golf course,

Moonah Links on the stunning Mornington

Peninsula, 140 players received a gift bag filled

with treats from our generous sponsors, as

well as a polo shirt provided by Neodigital.

2016 marked 12 years since the Daddo Charity Golf

Day began, making it one of Australia’s longestrunning

and largest charity golf events. As in past

events, players on both the Open and Legends

courses were eligible to enter two competitions;

‘Nearest to the Pin’ and the popular ‘Hole in

One,’ sponsored by Advance Careers, where

players could win a Jeep Cherokee. While most

players accepted the challenge, unfortunately

no one drove home in the new wheels.

Once play concluded, players headed to the

clubhouse to enjoy a few drinks and a barbeque

dinner before the best players and teams were

awarded their prizes. The famous monster

raffle was then drawn, gifting 26 lucky players

a prize donated by our generous sponsors.

The event raised $50,000 through ticket sales

and sponsorship, to help fund Independence

Australia’s psychology and counselling programs,

which receive little or no government funding.

Thank you

Independence Australia would like to extend

a sincere thank you to all those who attended

the 2016 Daddo Charity Golf Day. We would

also like to thank our event day supporters and

the Daddo family for their constant support.

Plans are now underway for the 2017 Daddo Charity

Golf Day. We look forward to seeing you all then!

6

Inform


Calendar

What’s on

March — May 2017

MARCH

4 March

NDIS Community Fun Day

Ballarat

18 Armstrong Street, Ballarat VIC

ndis.gov.au

21 March

Spinal Cord Injury

Family Support Group

Royal Talbot Rehabilitation Centre

1 Yarra Blvd, Kew VIC

0403 046 816

29 March

NDIS Early Childhood

Community Forum Ballarat

900 Pleasant Road, Redan VIC

ndis.gov.au

APRIL

7 April

World Health Day

Worldwide

18 April

Spinal Cord Injury

Family Support Group

Royal Talbot Rehabilitation Centre

1 Yarra Blvd, Kew VIC

0403 046 816

2430 April

World Immunisation Week

Worldwide

MAY

26 May

Polio Network of Victoria

committee meeting

Autumn 2017

7


Feature

Trying a new activity unlocked a hidden talent in John.

From simple mounds of clay into brightly coloured

and functional artwork it’s all in a day’s fun

for this newly inspired potter.

Works

of heart

Photography by Nicole Reed

8 Inform


Autumn 2017

9


Feature

Over a year ago, John, who lives in one of

Independence Australia’s home facilities,

was feeling that his daily activities were not

matching what he was actually interested

in. It was then that John started working

with one of Independence Australia’s Case

Managers to provide him with guidance

on how to reconnect with friends, as

well as joining a regular pottery class.

John has always been interested in being creative, and

pottery appealed to him because of the tactile nature of

clay he enjoys getting his hands dirty and the multiple

processes involved in producing a piece of ceramic work.

The Independence Australia Recreation Program funded

John’s first classes, with his family then taking over the

costs. As well as making presents for his family, John

produced over 25 items bowls, mugs, plates, and vases

to name a few but was feeling down that he was finding

it hard to take it to the next level and sell his products.

John recently re-engaged with his Case Manager to find

a way to sell his ever-growing collection of pottery. After

some discussion within the team, it was discovered that the

Knox City Council Christmas Carols was hosting a market

to showcase handmade items made by those living with a

disability, so John’s Case Manager engaged the Council.

Autumn 2017

11


Feature

“John has always been

interested in being creative,

and pottery appealed to him

because of the tactile nature

of clay he enjoys getting his

hands dirty and the multiple

processes involved in producing

a piece of ceramic work.”

They were able to move past their three-month waitlist,

and secure a spot for John to sell his products, with

only five days’ notice. To further assist John in the

public debut of his ceramic works, an art-focused

support worker was hired to help John at the event.

“I was most impressed. It went off really well. Please thank

everyone involved. I really liked the worker when she left

I told her, ‘This isn’t goodbye! I’d like to meet up again’. My

stall did better than even Vision Australia’s! I got some great

ideas for how to maybe paint my pieces differently in my

next classes, and I felt good because people liked my work.”

At the market John sold all but three items and is looking

forward to making more in the near future. He enjoyed

seeing how much children enjoyed his work, especially

the cut-out animals featuring bright colours and patterns.

If anyone living with a disability feels they may benefit from the

assistance of having access to one of Independence Australia’s Case

Managers, they can contact Dr Andrew Sinclair on 1300 704 456.

12

Inform


Autumn 2017

13


Beach Access Update

Wheels

to the

water

Disability access mats have

been rolled out across many

Australian beaches this summer,

giving everyone the chance to

enjoy the sand and the waves.

Victoria’s Hobson Bay City

Council in Melbourne’s west

was the first in the state to

introduce the infrastructure

at Altona and Williamstown

beaches. The beach mats

stretch from the foreshore and

allow those in a wheelchair

24-hour access to the water.

Described as an “amazing”

experience in an interview with

9 News, local water enthusiast

Alex Gatt enjoyed the opportunity

to join his siblings in the ocean.

The success of these two

beaches has prompted many

other local Councils to follow suit,

with Mount Martha, and Torquay

Beach (in Queensland) rolling

out the beach mats soon after.

In addition to beach mats,

specifically designed beach

wheelchairs are being deployed

across Australia and are

available free of charge. Beach

wheelchairs are able to navigate

the sand and do not require

the presence of beach mats

to help people with disabilities

experience the waves, sea

and sand. These ‘allterrain’

wheelchairs can be booked or

borrowed from local shires or

visitor information centres.

14 Inform


Connecting lives

Through the use of technology,

people living with a disability can

be connected to local and global

communities, create their own

opportunities, and self-manage

aspects of their lives.

Staying connected has never been

easier, however it comes at a cost,

which can be prohibitive for some.

Some organisations have recognised

the importance of having access to

technology for those who cannot

afford a computer. These companies

offer refurbished computers and

laptops at reduced costs for people

with concession cards, or who

meet other selection criteria.

Computerbank Victoria Inc.

computerbank.org.au

03 9600 9161

Green PC

greenpc.com.au

B2C Recyclers

b2crecyclers.com.au

03 9005 0101

Autumn 2017

15


Travel

¡Hola! Loving

life in Mexico

In 2002, Estelle Parker was already one year into her career as

a foreign policy analyst and diplomat when her then-boyfriend,

Matt Lennox, incurred a spinal cord injury that left him C5

quadriplegic. Estelle and Matt were determined not to let Matt’s

injury prevent them from realising their professional dreams.

16

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The Department of Foreign Affairs and

Trade allowed Estelle to work in its

Victorian office while Matt underwent

rehab at Talbot. After two years

surrounded by Matt’s family and friends

in Melbourne, Estelle and Matt moved

to Canberra so that she could take on

a policy role. She is now Australia’s

Deputy Ambassador in Mexico City.

Matt is taking a three-year break from

his full-time job as a Business Analyst

(which he held for seven years before

they moved), to take on the role of

‘diplomatic spouse’. Given the family is on

an Australian Government posting, NDIS

agreed to fund Matt’s support workers.

Mexico City is not the most accessible

city, although it is improving. Most public

buildings like cinemas, department

stores, government departments,

museums, and theatres, have wheelchair

access, but many commercial buildings

do not. Footpaths are often cracked,

or do not have curb cuts, and new

footpaths are often built without

consideration for wheelchair users.

Matt is getting around this by planning

his outings. He has worked out

accessible routes to and from local

shops and restaurants, and is getting

to know the local restaurants and

bars that have wheelchair access.

Wheelchair taxis in Mexico City are

generally reliable if booked in advance.

After Estelle was appointed, the Australian

Embassy found an accessible apartment

for the family to live in and arranged

for minor renovations to the property.

The Department of Foreign Affairs and

Trade’s attitude to employees with a

disability or with carer responsibilities

has changed for the better since Matt

had his accident in 2002. There is now a

designated ‘Disability Champion’ chosen

from amongst Australia’s highest ranking

diplomats, and the Department’s Women

in Leadership initiative has meant flexible

working hours are becoming more

accepted. This allows Estelle to balance

her work and carer responsibilities.

Overall, the move has been positive for

Matt, Estelle and their two children who

are aged five and seven. In addition to

exploring the fascinating history and

culture in Mexico City, the family have

spent a week in an accessible resort in

Campeche province, built by an American

former marine with quadriplegia and his

wife, and have visited a small Mexican

town for a weekend away with friends in

a beautiful hacienda in the mountains.

They have enjoyed incredible Mexican

food, along with authentic aged tequila

and traditionally brewed mezcal. They are

looking forward to further adventures in the

next three years of their posting in Mexico.

Autumn 2017

17


SpinChat

Spinning

yarns &

marking

milestones

As the 2016 school year drew to a

close, SpinChat reached another

exciting milestone in our program.

We have spoken to a total of 50,000

young people about risk prevention

and spinal cord injuries over the

four-year duration of the program

that’s over 12,000 people a year!

This milestone is a fantastic one to reach, as

each audience member brings us closer to

our goal of reducing the incidence of spinal

cord injuries due to risk-taking behaviours.

This milestone would not have been possible

without our passionate speakers their

hard work and determination has made

SpinChat what it is today. They approach each

presentation with purpose and a passion for

spreading the risk prevention message.

Also in 2016 we had a number of firsts our

first joint Spinal Cord Injury Awareness week

celebration with the TAC (Transport Accident

Commission), and our first International Day

of People with Disabilities presentations for

the Level Crossing Removal Authority and

Melbourne Metro rail and we’re looking forward

to nurturing these relationships further in 2017.

SpinChat aims to raise awareness, promote

prevention and educate secondary students

about spinal cord injury. Those at highest risk of

suffering a spinal cord injury are aged between

15-24 years old (80% male, 20% female). The

program sees young people with a spinal cord

injury speak to community groups, schools

and sporting clubs about life before their injury,

the cause of their injury, and life since.

To find out more, or to book a presentation,

visit www.spinchat.org.au or call 03 9418 0490.

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“We are just regular

people, nothing

inspirational, but just

living normal lives

like any other adult.”

Featured SpinChat speaker

Antonio Vecchio

Tell us briefly about your accident and your injury?

When I was 19, I was involved in a single car

accident while driving to work in extremely

wet conditions, which left me with a spinal

cord injury (C6/7 complete quadriplegic).

What are your interests?

I enjoy fine dining and wine, keeping fit,

music, reading, and soccer. I have played

wheelchair rugby for almost 10 years, I try

to volunteer when I can, and I love seeing

others succeed. I also enjoy just sitting

drinking a coffee and people watching!

Do you work/study? If so, what do you do?

My main priority is my studies at Chisholm

where I’m currently learning about mental health

and alcohol and other drugs, with the intention

of working in the mental health industry.

What are you reading right now?

‘Eleven Rings’ by Phil Jackson.

Why do you think SpinChat is important?

I think it’s important because education towards

better decision-making is something that may help

these young people as they transition to young

adults. If the program helps just one person make

a decision that saves their or someone else’s life,

that to me is priceless. Also, removing the stigma

around people with spinal injuries, showing that

we are just regular people, nothing inspirational,

but just living normal lives like any other adult.

What is so rewarding about SpinChat?

To me the opportunity to help young people is

priceless. The most rewarding aspect is after a

presentation when the students reach out to me

because they want to share their story with me

or simply just say thank you. It’s very humbling.

What is something not many people know about you?

I’m a big NBA fan, and also I was part of a band

that performed for Muhammad Ali in 2000.

Autumn 2017

19


Spina Bifida Foundation Victoria

Adventure time

Recently, a group of

Spina Bifida Foundation

Victoria members had

the opportunity to enjoy

a relaxing summer

camp in the picturesque

Glenmore Valley.

The close-knit group of 15 adults

experienced a number of typical

camp activities including archery,

campfire stories, canoeing, and

yabbying. They caught up with

old friends, made new ones

and enjoyed time away from

home. Due to the challenges

of living with Spina Bifida, the

majority of the campers still live

at home with their parents, so

this was a valuable chance to

get away from the day-to-day,

and socialise with people dealing

with the same challenges.

This was the first partnership

camp between the Spina Bifida

Foundation and Independence

Australia. The holiday program

is provided at a subsidised rate,

or free of charge, thanks to

the outstanding generosity

of our donors.

To find out more about the camp and

recreation services we offer, email

services@independenceaustralia.com

20

Inform


What’s Out There Day

New tips on

the block

The recent ‘What’s Out There

Day’ event at the Royal Talbot

Rehabilitation Centre was held on

Wednesday, 7 December 2016.

It was attended by a number of IA representatives:

Paul Creswick (the new Business Development

Officer), Jenny Koadlow (one of the IA

psychologists) and Melissa Alemis (a provisional

psychologist on placement with Jenny).

The day started with a panel discussion, including

stories from individuals who have experienced an

SCI (Emma Booth, Richard Lee, Marty Korytowski,

Antonio Vecchio, Christian Brackley, Rocca Salcedo,

and Martin Heng). The panel was facilitated by

Nazim Erdem and covered a range of issues

including: families and relationships, new bowel and

bladder regimes, pain management techniques,

rehabilitation, re-integration into communities,

return to work and/or study, sporting pursuits, and

travel tips. The audience members were provided

with opportunities to ask the panel members

questions, and this generated in-depth discussions.

The panel members shared some inspiring stories

and motivational philosophies consistent with

positive psychology and a strength-based approach.

One panel member made the comment “Look

at what you can do and build on it”, while other

members recommended getting back into the

community as soon as possible and keeping your

mind busy to maintain independence. A consistent

theme that emerged was returning to work and/

or study and the sense of accomplishment this can

bring. Another shared viewpoint was the importance

of routine and utilising organisation skills to prepare

for unpredictable events and overcome barriers. A

pertinent example was planning ahead for plane

travel both domestically and internationally that

included strategies such as organising an aisle

chair and sufficient catheters. There was also

consensus regarding pain management strategies

that included: hydrotherapy, generally keeping

fit and flexible to maintain range of movement,

massage, mindfulness techniques, Pilates to

strengthen back and neck muscles, using a manual

wheelchair to maintain strength, and yoga.

The panel discussion was followed by an

informal lunch, providing opportunities to

meet panel members and other participants

experiencing an SCI. After lunch, there

were small group discussions that engaged

participants in more detailed discussions.

There were multiple exhibits, including one from

Independence Australia, which offered relevant

information to participants experiencing an SCI,

their families, and health professionals. Modern,

lightweight wheelchairs, modified sporting

and leisure equipment, modified vehicles, and

specialised travel agent services were some

of the showcased products. Finally, there was

an opportunity to observe a scuba diving

demonstration in the hydrotherapy pool.

If you want to attend the next WOT Day

please contact Jenny Koadlow on 03 9418 0410

or jenny.koadlow@independenceaustralia.com

Autumn 2017

21


Psychology Services

Speak your mind

One of the least-recognised aspects of

disability is the psychological impact.

For those who acquire a disability, it is

often difficult to adjust to life when the

way you do things and the way you feel

about yourself has changed.

Even for those who have lived their

entire lives with a disability, each new

phase of life such as leaving home,

meeting a life partner, having children, or

ageing will bring with it new challenges.

The lives of your family members may

also be affected in different ways.

Our specialty is working with people with

a spinal cord injury or people who’ve had

polio, but we also offer counselling to

people dealing with any form of physical

disability. Our counselling service is

for individuals, couples or families and

can help you to achieve greater health,

happiness and enjoyment in your lives.

Who is eligible for this service?

Anyone who has a physical disability

and/or their family members. Children

and teenagers may be referred on to more

specialised child and adolescent services.

How do I access the service?

1300 704 456

psychology@independenceaustralia.com

independenceaustralia.com/services/psychology

What services do we offer?

Our psychology and counselling service

offers assistance with the following:

• adjustment to living with a disability

• anger

• depression

• disability and ageing

• family and relationship conflict

• grief and loss

• identity issues

• intimacy and sexuality concerns

• pain and fatigue

• self-esteem

• social isolation

• stress and anxiety

• thoughts of suicide; plus more

We also offer different peer support groups

and workshops. These vary in their focus

and are specific to people with a physical

disability and/or their family members.

22

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How does therapy or counselling work?

We offer a confidential, supportive and

nonjudgemental counselling service.

You can:

• discover different perspectives

on your situation

• discuss choices or opportunities

and gain insight into personal

strengths and challenges

• explore ways of coping with troubling

emotions, thoughts or situations

• gain a better understanding of

what you are experiencing

• seek feedback, information or support

The goals of therapy are discussed

in the initial sessions and are driven

by your personal needs. The specific

purpose or aim of any therapy will vary

from person to person, and depends

upon your situation and needs.

Meet our psychology students

Antonietta Scaffidi and May Cigdem

are Provisional Clinical Psychologists

commencing a placement at Independence

Australia this year. Both women are in

their final year of a Master of Psychology

degree at Swinburne University and have

long had an interest in health psychology.

Their experience is varied and includes

work in both hospital settings and

community clinics with clients of all

ages and from diverse backgrounds,

with concerns including adjustment

issues, anxiety disorders, depression,

grief and loss, and a history of trauma.

Antonietta and May aim to enhance the

wellbeing of clients by increasing their

resilience and allowing them to tap into

their inner resources (using a strengthsbased

approach) while navigating and

connecting with external supports and other

resources within our community. They also

hope to assist clients in managing pain and

stress, as well as teaching relaxation and

mindfulness techniques, and becoming

aware of unhelpful thinking patterns.

Autumn 2017

23


Men’s Wellbeing

All too often, men put off going to the

doctor or, worse still, won’t go at all.

In fact, studies show that three times

more men than women say they

haven’t visited a doctor in the last

12 months, while 25% claimed they’d

wait as long as possible before

getting help with a health problem.

What’s up doc?

Manning up to

see your GP

Unfortunately, feeling fine is not the same as

being healthy. High blood pressure, blood sugar

and cholesterol can silently affect your health,

and difficulties urinating may seem small at

first, but should be checked out early to avoid

potentially serious health problems in the future.

If you or a mate are putting off seeking

health advice for fear of finding out about

potential issues, it’s time to man up. Just

like changing to a better diet, doing some

exercise, or losing weight, it’s about taking

responsibility for your own health.

If you’re over 50, you should get your prostate

checked every 12 months.

Many men’s prostates get larger as they

get older due to a non-cancerous condition

known as ‘benign prostatic hyperplasia’, or

prostate enlargement, so instead of worrying

yourself sick, it’s best to see your doctor for

peace of mind. If you’re experiencing the

following symptoms it’s important to make

an appointment as soon as possible:

• You need to urinate more frequently

or pass smaller amounts.

• You need to rush to the toilet more often.

• You’re having difficulty starting

to urinate (hesitancy).

• You feel like you’re straining or

taking a long time to urinate.

• You’re experiencing a weak flow.

• You feel like your bladder isn’t completely

empty once you’ve urinated.

Don’t be tempted to diagnose yourself. Your

doctor should investigate these symptoms

but don’t panic they don’t necessarily

mean you have prostate cancer.

24

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Featured Product

Hartmann’s

PütterPro 2

Compression

without the

complexity

According to recent statistics, chronic

venous insufficiency and leg ulcers

affect approximately 1-2 people per

1,000 of the general population, with

approximately 10-20 people per

1,000 developing ulcers during their

lifetime. Ulcer healing rates can be

poor, with up to 50% of venous ulcers

present and unhealed for 9 months.

Unfortunately ulcers that don’t heal

can have a detrimental impact on

the overall health and wellbeing

of the patient, as well as cause

significant economic burden. There

are several challenges with existing

compression therapies, most of which

focus on poor product compliance.

Having a compression solution that’s

easy-to-use and patient friendly will

increase compliance and ultimately

create better healing outcomes.

PütterPro 2 is the new two-layer bandage providing

inelastic compression that lasts for seven days. The

main indications for PütterPro 2 are venous leg ulcers

and chronic venous insufficiency. In summary, chronic

venous insufficiency is a term used to describe the

changes that can take place in the tissues of the leg,

due to longstanding high pressure in the veins. This

high pressure in the veins usually occurs because blood

flow in the veins is abnormal, secondary to valvular

incompetence, causing reflux (reverse flow) in the veins.

So how does PütterPro 2 help with greater blood flow?

It’s the combination of short and long stretch bandaging

that provides the ideal mode of action. The padding

ensures the stiffness of the applied bandage when the

patient is active (short stretch). In contrast, the outer

layer ensures the upkeep of resting pressure after

several days because the short stretch compression

bandages decreases over time (long stretch). So having

the combination of dressings ensures resting pressure is

maintained for up to seven days to the shape of the leg.

Key points about PütterPro 2:

• Latex free

• Seven-day wear time

• High patient comfort

• No measurement of the

leg circumference required

• One size fits all

• Conformable, soft first layer

• Less likely to have slippage

due to the cohesive

nature of the bandage

Why not try PütterPro 2 today?

Shop online at store.independenceaustralia.com

Autumn 2017

25


NDIS

Some people have said, “If I had to choose between

walking again or getting back the use of my bowel and

bladder, I would rather use a wheelchair the rest of my

life but be able to use my bowel and bladder.”

The National Disability Insurance Scheme (NDIS) has

shifted the reimbursement landscape, providing an

opportunity for disabled people with continence issues

to access the products they need, so they can live an

inclusive and fulfilling life with minimal interference

from their disability and the issues related to it.

Incontinence

and the

National

Disability

Insurance

Scheme

Are you NDIS-ready when

it comes to your continence

care and catheters?

The impact of incontinence on an individual

can be devastating in terms of a person’s

ability to participate in many life areas,

including the confidence to gain employment,

or increased social isolation due to the

stigma of being incontinent in public.

Currently there are a number of existing state and

federal-based funding models whereby people with

a disability can access funding for incontinence such

as CAPs, SWEP and ENABLE. As this will cease when

people transition into the NDIS, moving into the NDIS

is your opportunity to revisit what will help you best

manage your continence needs.

Coloplast recently conducted an NDIS participant

survey and found that unless continence is actively

raised by the participant or the planner it may be

completely missed all together.

• 25% of survey participants did not have continence

raised at all during their planning meeting.

• People said, “I didn’t even know I could have

included continence products on the plan” and,

“I would have appreciated more information

about the different products available before my

planning meeting.”

• 40% of participants would like to make

changes to their continence funding

in their next NDIS meeting.

Independence Australia can guide Victorian residents

in understanding how to navigate the NDIS.

To find out how to access our disability services now

and get NDIS-ready, call 1300 704 456 or email

services@independenceaustralia.com. For residents in other

states, information can be accessed from www.ndis.gov.au

26

Inform


polioperspectives

polioperspectives

Auspiced by Independence Australia

Autumn 2017


polioperspectives

Reflections

on 2016

I’d like to extend my sincere thanks

to all Polio Network Victoria

committee members who continue

to be the link between the support

groups in their region and the

workings of the PNV committee.

In May last year, Gary Edney joined us as a

committee member and his extensive legal

knowledge and experience has provided

invaluable support. New members are always

welcome, so please give this consideration.

Thanks are extended to Independence Australia staff

who have assisted with practical support for meetings

and the preparation of materials for Polio Day.

Polio Day 2016 was a particularly important

event for PNV as it celebrated 60 years since the

introduction of the Salk vaccine into Victoria in 1956.

We were delighted to have as special guests Sir

Gustav Nossal AC, CBE, Mr. Don Jago (Rotary

Club of Camberwell), Mr. Bill Jarrad (Mindwerx

International) and Mr. Frank McGuire MP

(Parliamentary Secretary for Medical Research).

Thanks to Fran Henke, who undertook the task

of MC on the day, for her usual attention to

detail and background on our special guests.

Special thanks also to Maxine Keystone and

Georgie Stayches for their tireless work to make

the day such a success, and for the raffle prizes

provided by members Joan Tie and Lyn Bates.

Feedback from attendees was most positive.

Some polio survivors may have already rolled over

to the NDIS and others will be part of the rollout

over the next months and years. I urge you to be

diligent in gathering all the supporting evidence

you can to enable a suitable plan to be developed

which best matches your needs now and into

the future. It will be a challenging and hopefully

rewarding time for those eligible to enter the NDIS.

This year Polio Australia hosted the Australasian-

Pacific Post-Polio Conference in Sydney.

Congratulations to all involved in bringing

this most valuable conference together.

In November, I attended the Annual General Meeting

of Polio Australia. As part of the awareness-raising

campaign ‘We’re Still Here’ a large group of polio

survivors ‘walked’ to the House of Representatives

and Senate at Parliament House, Canberra.

Polio Network Victoria (under the auspice of

Independence Australia) is still keen to employ

an Administration Officer on a part-time basis

(10 hours per month) to help with office tasks,

enquiries and distribution of information. This

position can be undertaken from your home

with back-up resources from IA. If you are

interested, please contact me to discuss.

I hope you’ve had the opportunity to rest,

draw breath and be ready to carry on again

with all the wonderful work you do every day

to support fellow polio survivors and educate

health professionals and the general public.

Bev Watson

Chair, Polio Network Victoria

28 Inform


polioperspectives

In the Spring 2015 edition of Inform

the first half of Eulberg’s article ‘What

Having Had Polio Causes, Might Cause

and Does Not Cause’ was published.

What having had polio

causes, might cause

and does not cause

PART 2

The second half of the article covers what

symptoms may be related to polio (secondary

effects) and what symptoms may be compounded

by having had polio (tertiary effects). It provides

useful insight for polio survivors and others into

what symptoms are and are not polio-related.

More important than establishing the relationship

between a condition and prior polio is finding a

treatment or solution for the medical problem.

Post-polio experts agree that in most instances

the management or treatment plan for the

secondary and/or tertiary problems are the

same as for people who did not have polio.

Published with permission by Marny K. Eulberg, MD,

Family Practice, Denver, Colorado

Marny K. Eulberg, MD, is

a polio survivor who has

worn a brace for more than

30 years. She is a family

physician who founded a

post-polio clinic in 1985 and

has seen more than 1,500

polio survivors. Eulberg was

named ‘Colorado Family

Physician of the Year’ by the

Colorado Academy of Family

Physicians in 2005.

She is a member of the

PHI Board of Directors

and serves as Secretary.

Autumn 2017

29


polioperspectives

What symptoms/signs may be related to

polio (secondary effects)?

Increased wear and tear on joints.

Including osteoarthritis, tendonitis, tendon

tears, bursitis. When a person has a weak

limb, the unaffected or lesser affected leg

or arm does more work to compensate,

and weakness from polio can lead to

arthritis problems in the good limb as well.

People who use their arms in place of

their legs (crutch walkers, users of canes,

manual wheelchair users) put more stress

on the joints of the upper extremities

than someone who has normal use of

their legs, and this can result in damage

to cartilage, tendons and ligaments in

the wrists, elbows and shoulders.

Nerve compression. Carpal tunnel

syndrome can be caused/aggravated

by pressure on the heel of the hand and

palm from crutches and canes or from

propelling a manual wheelchair. Other

nerves may also be compressed by

abnormal positions of joints and of the

vertebrae in the spine. Symptoms of nerve

compression are usually a numbness

or tingling, an ‘electric shock’ sensation

and sometimes progressive weakness

in the area of the body supplied by the

particular nerve that is being pinched.

Increased respiratory problems

from increasing curvature of the

spine resulting in less room for

the lungs and internal organs.

Fatigue from increased energy

expenditure. Walking with an abnormal

gait, use of crutches and propelling a

manual wheelchair all require more energy

than unimpeded walking. For example,

walking with a locked knee can use up

20 percent more energy than walking

with an unlocked knee, and walking with

two crutches can burn up to twice as

much energy as an nondisabled person

would use walking the same distance.

Headaches. These can be ‘muscle

contraction’ headaches that may be

caused by chronic overuse of neck

muscles, unusual use of neck muscles

when doing daily tasks or related

to abnormal positions of the neck

from muscle imbalance or scoliosis.

Headaches, especially upon awakening,

can be from inadequate ventilation

(breathing) overnight that may be

due to respiratory muscle weakness

and/or sleep apnea that may or may

not be connected to prior polio.

Emotional issues. These can include post

traumatic stress disorder associated with

hospitalizations and medical procedures

and/or teasing by childhood peers or

dysfunctional family interactions with

the person who contracted polio.

30 Inform


polioperspectives

What symptoms may be compounded by

having had polio (tertiary effects)?

High blood pressure and/or coronary

heart disease aggravated by weight

gain and decreased exercise that were

related to limitations imposed by polio.

Weight gain (including overweight and

obesity) linked to decreased exercise/

activity. Significant obesity, can, of

itself, lead to obstructive sleep apnea

and restrictive lung disease plus

other problems including diabetes,

osteoarthritis of hips and knees, etc.

Diabetes in susceptible individuals, related

to decreased activity and/or weight gain.

Skin breakdown, or pressure sores,

from prolonged sitting without shifting

position, from sleeping in one position

due to difficulty turning in bed or from

poorly fitting supportive devices

(corsets, braces).

Situational depression associated with

decreased functioning and independence.

What symptoms/signs are

NOT related to polio?

Tremor of arm, leg or head especially

when that body part is at rest.

Problems with ‘sense organs‘.

Vision, hearing, taste, smell.

positions around a joint or from crutch/

cane walking or propelling a manual

wheelchair and cause these symptoms.

Inability to know the position of a

part of the body or where it is in

space (decreased proprioception).

Food getting stuck in the lower

esophagus (in the midchest or lower).

Abdominal pain or diarrhea.

Cancer of any kind.

Liver disease.

Kidney disease.

Most infectious diseases, except perhaps

pneumonia in a person with a weak

cough or who has swallowing problems

and is ‘aspirating’ food into their lungs.

Skin rashes, but unrelieved pressure

on areas of the skin can cause

skin breakdown and redness.

Diabetes, but weight gain and

decreased activity often worsen

blood sugar control in persons with

other risk factors for diabetes.

Hardening of the arteries (atherosclerosis)

in the heart, legs, neck, brain, although

lifestyle changes induced by polio may

increase the likelihood of developing

this when added to other risk factors.

Seizures.

Allergies to medicines or to things

in the environment.

Dizziness or vertigo, ‘the room spinning’.

Sharp, shooting pains or severe burning

pain with numbness. Generally, polio

does not cause numbness, but nerve

compression can result from abnormal

Autumn 2017

31


polioperspectives

Polio past & present

As one of the largest disabled

groups in the world, polio survivors

helped to advance the modern

disability rights movement through

campaigns for the social and

civil rights of the disabled.

Polio is a highly infectious disease caused by

a virus that invades the nervous system. The

virus enters the body through the mouth and

multiplies in the intestine. Initial symptoms

are fatigue, fever, headache, pain in the limbs,

stiffness in the neck and vomiting. It can

cause total paralysis in a matter of hours.

In Australia from the 1930s to the 1960s,

significant numbers of Australians experienced

paralytic polio (between 20,000 and 40,000 people).

Many polio survivors living in Australia are now

living with a range of symptoms and chronic

conditions which may be attributable to the original

polio infection, as well as the challenges of living

with the effects of ageing with disability.

Today, the disease has been eliminated

from most of the world, and only three

countries worldwide remain polio-endemic;

Afghanistan, Pakistan and Nigeria.

Over the next two editions of Inform we will

look at the history of polio in Australia through

a timeline covering from the first recorded

epidemic in 1885 to 2016 when the Life Stage

Matters, Australasian/Pacific Conference

was held in Sydney by Polio Australia.

The figures

Worldwide

The World Health Organization estimates

that there are 10 to 20 million polio survivors.

1 in 200 infections leads to irreversible paralysis.

Among those paralysed, 5% to 10% die when

their breathing muscles become immobilised.

Polio cases have decreased by over 99%

since 1988, from an estimated 350,000

cases then, to 74 reported cases in 2015.

Australia

No less than 100,000 Australians in 2013

are living with the later effects of polio.

Victoria

7,016 notifications of poliomyelitis

and 509 associated deaths were

recorded between 1929 and 1977.

1 in 4 paralysed by polio weren’t recorded

in official figures as the majority of those

assessed were no longer infectious by

the time their polio was diagnosed.

1 in 200 infections from the polio

virus did enough damage to those

infected to present with paralysis.

Source: Australian Bureau of Statistics (ABS

19012013) and World Health Organization 2017

32 Inform


polioperspectives

Polio in Australia and Victoria

18851932

1885: First epidemic

recorded in Australia

18 cases at Port Lincoln, SA.

1903: Victoria’s Sir William

Colin Mackenzie (18771938)

wrote the standard references

for the treatment of polio

in Australia, America and

England. Colin Mackenzie left

Australia in 1903 to continue

study in orthopaedic surgery,

particularly the work of Hugh

Owen Thomas 18341891,

after whom the Thomas Splint

was named. He developed

a new way of treating polio

patients. Immobilization and

splinting was not enough,

adding ‘muscle re-education’

to the rest and recovery. He

encouraged maximum use of

a patient’s remaining muscle

strength to reduce muscle

deformity. Dr Colin Mackenzie

changed the way polio

patients received treatment

not only in Melbourne, but

throughout the world.

1908: 155 cases recorded in

Victoria including author-tobe

of ‘I Can Jump Puddles’,

Alan Marshall, then aged 6.

1911: Polio first became a

notifiable disease in Tasmania,

with all Australian states and

territories following by 1922.

1915: Private Thomas Thomas,

born 1885, Port Lincoln, South

Australia, transferred to a

hospital ship then the Military

Hospital in Bristol, England

suffering with polio paralysis

of left leg and foot. Returned

to Australia as medically

unfit to serve in April 1916.

1918: Major outbreak.

1925 to 1931: Dame Jean

Macnamara was consultant

and medical officer responsible

to the Poliomyelitis Committee

of Victoria and in 193031

was an honorary adviser on

polio to authorities in New

South Wales, South Australia

and Tasmania. From 192851

she was honorary medical

officer to the Yooralla Hospital

School for Crippled Children.

In 1935 she served on the

Royal Commission to advise

Sister Kenny’s methods of

treatment. She was a member

of the Consultative Council for

Poliomyelitis 193742 and 1947.

1920s: Work on polio care

and research from 192531.

Jean Macnamara interested

Macfarlane Burnet in

researching a convalescent

serum. This led to them

discovering the different

types of poliovirus, each

producing its own antibodies.

1928: 185 cases in Victoria

155 under age of 16, of those

147 under 12. Two eldest,

men of 44 and 55 both died.

1931 and 1932: Record

number of cases in Australia

462 and 717 cases.

1932: Queenslander Sister

Kenny initiated a polio

treatment that promoted

passive and active movements

in patients. This method

was deemed controversial,

going against immobilisation

recommendations. However,

her work is now considered to

be the forerunner of modern

physiotherapy. One of her

hospitals was at Hampton.

Next edition

19332016

Autumn 2017

33


Victorian All Abilities State Netball Team

Smells like

team spirit

The Independence Australia

Victorian All Abilities State Netball

Team enjoyed a successful 2016

Marie Little Shield campaign,

finishing third at the national

netball carnival for people with

intellectual disabilities.

Head Coach Janet Parker reflected on the

tournament and thanked major sponsor

Independence Australia for their support.

“The Marie Little OAM Shield offers a brilliant

opportunity for competitors. Without the support

of Independence Australia, these players would not

have access to such an affordable competition.”

“It’s a great honour to represent Victoria,

and this playing group has represented

our state with pride,” said Parker.

The Independence Australia Victorian All

Abilities team narrowly lost their semi-final

against South Australia, after winning their pool

matches against QLD and Western Australia.

New South Wales were the eventual winners,

claiming their second Marie Little Shield.

The Marie Little Shield, in its fourth year, is

supported by Netball Australia and provides

an opportunity for women with intellectual

disabilities to compete at a national level.

Victoria is represented by women from

across the state who undergo intensive

selection and training throughout the year

in preparation for the tournament.

NetSetGo

The Independence Australia Victorian All Abilities

team is an integral part of Netball Victoria’s high

performance and community pathways. The team

is underpinned by a strong All Abilities netball

pathway, beginning with Inclusion NetSetGo, a

modified introductory netball program for people

with disabilities, All Abilities netball competitions

at 16 sites across Victoria and an All Abilities

division of the Netball Victoria State Titles.

For more information about the 2017 Independence Australia

Victorian All Abilities State Team and All Abilities netball,

please contact the Community Development Team on

03 9321 2244 and community@netballvic.com.au

34

Inform


DIamond Valley Basketball Association

40 years

of ballin’

In 2016, Diamond Valley Basketball

Association (DVBA) celebrated its

40th anniversary. It dates back to

humble beginnings in 1976, where a

two-court facility was built on Civic

Drive in Greensborough to allow locals

to take part in organised basketball.

Up until 1998, the Diamond Valley Basketball

Association used to manage the stadium and

the Diamond Valley Sports and Fitness Centre.

We were very passionate about servicing the

community with a range of programs and aimed

to give everyone a sense of belonging. It’s a ‘home

away from home’, inclusive of all competitions

and programs for able-bodied, intellectually

disabled and wheelchair-bound athletes.

The growth of basketball locally, within the past

40 years, has been exponential. The Association

today has five regulation-sized courts with over

5,500 playing member. It caters to male and

female athletes of all levels, both senior and junior,

offering competitions and programs so they

are able to participate in the sport they love.

Though the Association has taken big steps forward

in its 40-year journey, one thing has fallen behind

the accessibility of the centre. Currently the facility

has hidden, very limited and impractical disability

and pram access. There is one single wheelchair

lift to access the courts, and unfortunately all of

the bathroom and kiosk facilities are on the higher

levels, making utilising all amenities a tiresome

process for some of the centre’s patrons.

DVBA CEO Ross Wignell has been a big player

in pushing our 40th anniversary wish a ‘master

plan’ redevelopment of the facility, meeting with

Council and stakeholders in order to turn the

idea into a reality. The master plan blueprint

is to expand the facility to 11 courts and to

solve the accessibility problem once and for

all allowing players and spectators front door

ease and practicality of use, and provide the

opportunity to explore reintroducing programs

such as Wheelchair Basketball in future.

“Despite our Association coming along in

leaps and bounds in recent years, as it stands

currently we are limited in what programs

we are able to offer, or bring on, to service all

members of our local community. It’s important

to me to improve this as part of our master

plan, because of the many benefits it will

provide moving forward,” Ross explains.

In research conducted on the Association’s history,

it became evident through photos and personal

accounts that the DVBA once offered Wheelchair

Basketball, and even hosted Wheelchair Basketball

National Championships tournaments in the 1980s.

We hope that our 40th anniversary wish can soon

reach the approval and funding it requires to

become a reality and, moving forward, we can offer

a truly inclusive service to our local community.

Autumn 2017

35


STEP 1

Preparing

your plan

STEP 2

Developing

your plan

STEP 3

Getting your

plan approved

by NDIA

STEP 4

Choosing your

providers and

implementing

your plan

STEP 5

Reviewing

your plan

Your NDIS journey

of care starts here

The National Disability Insurance Scheme (NDIS)

is a new way to provide support for Australians

with a disability, their families and carers.

Independence Australia is a registered NDIS provider and offers the

full range of support for people including continence and nutrition

products, equipment, in-home care and support coordination.

Visit www.independenceaustralia.com/ndis

to learn more about NDIS and how it affects you.


Independence Australia offers a circle of support

As a leading service provider, our dedicated team of coordinators

are here to support your journey to the NDIS. We’ve got you covered

with a wide range of products, equipment, services and supports

for your NDIS package, all from our one organisation.

Core Support

Daily activities: in-home

and in the community

Supports and services to assist

a person to:

• do things independently

• participate in the community

• access educational opportunities

• develop daily living skills

We provide assistance with:

• self care / personal support

• high intensity self care assistance

• domestic assistance

• household activities and meal preparation

• one-on-one support for children

• community access, social inclusion

• transport

Direct contact

1300 032 774

services@independenceaustralia.com

Consumables and

continence products

Personal health care

products including:

• daily continence supplies

• wound care products

• protective aids

• nutritional products

• daily living aids

• skincare

FREE samples, fast delivery to door,

discreet packaging available.

Direct contact

1300 788 855

ndis@independenceaustralia.com

Capacity Building

Therapy, skills development

and coordination of support

Services to assist with enhancing

capacity building and achievement

of goals through:

• psychology and counselling

• therapy assistance (exercise)

• support connection

• coordination of supports

• specialist support coordination

• individual skills development and training

Direct contact

1300 032 774

services@independenceaustralia.com

Capital/Assistive Technology

Household aids and

mobility equipment

Equipment and aids for your daily

living needs, environmental and

mobility needs including:

• wheelchairs (power or manual)

• electric scooters

• lift chairs

• walkers and frames

• electric beds

• bathroom, kitchen and household aids

FREE delivery, consultation and trial within

the greater Melbourne area. Delivery

also available to Geelong.*

*Terms and conditions apply

Direct contact

1800 625 530

info@mobilityaids.com.au

For general enquiries email ndis@independenceaustralia.com or call 1300 032 774.


Useful Information

Polio Australia

03 9016 7678

Polio Services Victoria

03 9288 3900

Post Polio Victoria

0431 702 137

Breakdown Service (RACV)

131 111

Carers Australia

1800 242 636

Centrelink (Disability)

132 717

Centrelink (Aged)

132 300

Commonwealth Respite

& Carelink Centres

1800 052 222

Council on the Ageing (COTA)

03 9654 4443

Disabled Motorists Australia

03 9386 0413

Independent Living Centre

03 9362 6111

TADVIC

03 9853 8655

State-wide

Equipment Program

1300 747 937

Polio Support Groups

Ballarat

Wednesdays (bi-monthly)

Bayside (Hampton)

Tuesdays (monthly)

Bairnsdale

Bendigo

Saturdays (bi-monthly)

Eastern

Saturdays (monthly)

Geelong

Mondays (monthly)

Echuca

Hume

Saturdays (monthly)

Knox-Yarra Ranges

Tuesdays (monthly)

Mornington Peninsula

Saturdays (monthly)

Northern (Coburg)

Saturdays (monthly)

Shepparton

South Eastern

Saturdays (monthly)

Traralgon

Thursdays (bi-monthly)

Warrnambool

Tuesday (monthly)

38

Inform


Ready to swim

in the pool this

Summer?

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SOSecure FPAdvertA4 2016.indd 1

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Autumn 2017

39


Independence Australia is a:

NDIS approved provider

TAC service provider

DHHS service provider

Our services include:

In-home care

Accommodation

Respite care

Psychology and counselling

Case management

Outreach and support

Information

Post polio support

Health care products and equipment

1300 704 456

service.enquiry@independenceaustralia.com

www.independenceaustralia.com

independenceaust

@independenceaus

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