A voice for accessible, equitable and empowered lives Summer 2018

Our Charter for Change

MEMBER REVIEWSOUR HEALTHY LIVING CENTRE EVENTS AND FUNDRAISING

The advocacy issue

COMMUNITY CONNECTIONS

KSL

www.invacare.com.au1800 460 460

A LITTLE OUT OF THE ORDINARYRHEED MCCRACKENT34 100M WORLD RECORD HOLDER

SUMMER 2018 THE ADVOCATE 3

To gain permission to reprint any material that appears in The Advocate, please contact theadvocate@spinal.com.au or write to us at the above address.

The views expressed in The Advocate do not necessarily reflect the views of Spinal Life Australia. Spinal Life Australia takes no responsibility for equipment, products or service/s advertised in The Advocate.

Stock images used are sourced from ©iStock.com

Cover photo of Executive Manager - Member Services Ross Duncan with Jodi Gallon, Pat Allison and Tom Dutton.

Contents

CEO’s message

KSL

www.invacare.com.au1800 460 460

A LITTLE OUT OF THE ORDINARYRHEED MCCRACKENT34 100M WORLD RECORD HOLDER

SPOTLIGHT .............................................5NDIS UPDATE ..........................................6WESTERN AUSTRALIA NEWS................8CHRISTMAS APPEAL ..............................9CHARTER FOR CHANGE ..................... 12ADVOCACY IN ACTION ........................ 16OUR HEALTHY LIVING CENTRE ......... 18BACK2WORK ........................................ 20MEMBER REVIEW ................................. 22PEER SUPPORT ................................... 24WORLD POLIO DAY ............................. 26MEMBER UPDATE ................................ 27POST POLIO ......................................... 28TRANSVERSE MYELITIS ...................... 29MEMBER REVIEW ................................. 30PSW PROFILE ....................................... 31MEMBER REVIEW ................................. 32BRIDGE TO BRISBANE ........................ 33RESEARCH ............................................ 34SOCIALS ................................................ 36OUR COMMUNITY ............................... 37

From the National Disability Insurance Scheme (NDIS) roll out, to breaking ground on our Healthy Living Centre in Cairns, to our advocacy campaigns and much more, we’ve focused on growing and evolving, all the while staying true to our grassroots as a member-based organisation. We’ve continued to deliver our specialist services including personal support and allied health, which have adapted to the changes brought on by the NDIS to ensure we can best support you, while still operating under previous funding schemes in some regions.

I’m incredibly proud of our team for their dedication to working through these significant changes, and for ensuring that we share what we have learned with members and clients who are preparing for their first NDIS planning meeting.

There are only a few areas yet to transition to the NDIS, including the Sunshine Coast, Noosa and Gympie regions from 1 January 2019, before the full roll out is expected to be completed by mid-2019.

We are continuing to work with residents in these regions to prepare for their transition to the Scheme, while providing services to existing participants to activate and implement their NDIS Plan, and make the most of the opportunity to review this Plan after 12 months.

Along with the NDIS transition, we’ve focused on bringing our services closer to home for people who live in regional

areas, which led to the opening of our new office in Rockhampton early in the year, along with planning for our innovative Healthy Living Centre in Cairns.

We were proud to break ground on the Centre in September, which you can read more about on Page 18.

Another key milestone for 2018 was the launch of our member services in Western Australia, which took place after we received feedback from residents about support they would like to receive.

As you will read on Page 8, we are growing our community and giving more people the chance to connect with each other and our team, where they can provide peer support, share information and advocate for change on important issues in their local community.

As we look to the year ahead, we have many noteworthy projects on the horizon, and

I look forward to sharing more about these with you over the coming months.

Once again, I’d like to thank you for your support of Spinal Life Australia during another exciting, eventful year.

I wish you and your loved ones a safe and happy festive season, and look forward to staying in touch in the New Year.

Michael Powell Chief Executive Officer

The Advocate is the official publication of Spinal Life AustraliaEditor in Chief Jaclyn McKeown

Senior Editor Rachel Toune

Deputy Editor Callum Johnson

Design and Production Manager Stephen Lawrence

Advertising Coordinator Samantha James

Publishing and Printing VRC Printing

Contact The Advocate: theadvocate@spinal.com.au PO Box 5651, West End QLD 4101 1300 774 625 spinal.com.au

We’ve almost reached the end of 2018, and what a year it has been.

4 THE ADVOCATE Now supporting you closer to home. spinal.com.au

Total Ability provides the latest, high quality automotive driving aids to the Australian market

• Satellite Accelerator – a two handed driving solution for those with hand function

• Increased safety and reduced shoulder fatigue

• Controls can be easily re-installed when updating vehicles

• Technology developed in Italy and proven for more than 20 years

• Total Ability is an NDIS registered provider

www.totalability.com.au info@totalability.com.au | call 1300 858 410

Exclusive distributor for:

“Now I can drive more safely using both hands, thanks to

my Satellite Accelerator”

SUMMER 2018 THE ADVOCATE 5

SPOTLIGHT

Profile Debra Reaves

› Used to host a blues community radio show in Mackay under the name “Delta Deb”

› Life-long gardener and winner in last year’s Mackay Community Garden Awards

› Makes artwork out of stained glass › Sustained a T4 spinal cord injury after a motorbike accident near Gatton in 2002

› Has been a Spinal Life Australia member for 16 years and part of the

Mackay Network for five.

Placing an ad for exercise equipment led Mackay member Debra Reaves down a five-year journey to become a local mentor for people with spinal cord damage.

“I received a call from someone who saw the ad and they recognised my voice from my days as a community radio presenter,” Debra said.

“He also knew I had a spinal cord injury and asked if I wanted to come along to a lunch with members of the Spinal Life Australia Member Network in Mackay and meet with other people with spinal cord damage in the community.

“I was a bit of a hermit at the time and was hesitant, but I went along anyway.

“I ended up loving it so much that I didn’t miss another get-together for the next five years!”

Two years ago, Debra took on the role of volunteer Community Connector to help Spinal Life members stay connected to each other and share their lived experiences.

“It’s a very difficult time and you can really feel like you’re on your own out there,” she said of her experience with spinal cord damage.

“Having a group of people who know what it’s like to go through it and are familiar with local resources and services really does make life so much easier.”

In addition to socialising and sharing experiences, Debra said the Mackay Spinal Life Network also assists in driving advocacy efforts in the local community.|

“Our members often work with Mackay Regional Council on new infrastructure and initiatives to make things easier for residents and visitors with a disability,” she said.

“They’ve always been very receptive and it’s great to know that we’re being heard.”

Visit spinal.com.au/member-networks to join a Spinal Life Network.

Debra connects with community after phone

call from stranger

6 THE ADVOCATE Now supporting you closer to home. spinal.com.au

NDIS UPDATE

Toowoomba member Wendy Adams has become one of the first Australians to have nursing services funded under the National Disability Insurance Scheme (NDIS).She hopes she’s also not the last.

Wendy (above) was previously receiving funding for nursing services under her Your Life Your Choice plan and learned that her funding would not continue after she transitioned to the NDIS.

She successfully appealed this decision and will now receive funding for an hour

Wendy celebrates results of NDIS nursing services appeal

a day of essential nursing services at home, such as pressure wound care, skin health checks and catheter changes.

Wendy said nursing services were essential to prevent serious health issues developing as a result of her spinal cord injury.

“To expect someone with a disability to spend hours each day waiting at a doctor’s office or emergency room or needing to pay for daily visits out of their own pocket just isn’t sustainable,” she said.

“I’m very happy with the results of the appeal, but it should also apply to everyone with a disability who needs it.”

Spinal Life Chief Executive Officer Michael Powell said the organisation hoped Wendy’s win would help others access the same types of support through the NDIS, and ultimately influence the Scheme’s funding guidelines to make the process easier.

“While there are people who are covered for nursing services under the State Government’s Queensland Community Care program, there are still many like Wendy who don’t have that option and were not offered it through their NDIS plan,” he said.

“Not having these services readily available can lead to life-threatening health complications, resulting in more hospitalisations and further pressure on the health care system.

“It’s very important to ensure people who need nursing services can access funding for it, through the NDIS or elsewhere.”

The National Disability Insurance Agency (NDIA) recently advised they were working with the Queensland Government’s Department of Health to further clarify where funding responsibilities lie for nursing services.

Michael said he hoped this collaboration resulted in a positive outcome for all Australians with a disability.

Wendy received assistance from Legal Aid and Queensland Advocacy Incorporated to successfully appeal her decision.

Visit spinal.com.au/advocacy for more about our services for members.

“I’m very happy with the results of the appeal, but it should also apply to everyone with a disability who needs it.”

SUMMER 2018 THE ADVOCATE 7

NDIS UPDATE

The introduction of the NDIS has changed some of the processes for our Allied Health Service. Here’s what you need to know. The most significant change is that we now receive payments from individuals through your personal NDIS Plan, instead of being funded directly by the Queensland Government to deliver services to our clients.

As part of your NDIS Plan, you will be given your own personal funding allocation for aids and equipment, referred to as Assistive Technology, listed under the ‘Improved Daily Living’ heading.

Allied Health assessments 1. Our Occupational Therapists are required to prepare a quote

for the NDIS which estimates the time it will take to complete your equipment prescription, or assessments for driving, home or vehicle modifications, which includes time for travel and reporting, as well as liaising with suppliers and other communications.

2. Once you accept this quote and we do the assessment and report for the NDIS, we will charge you for our services, which are covered under your NDIS plan.

3. We will send an invoice to the person, agency or service provider who is managing your Plan (which may be you if you’re self-managing), to pay for our service from your NDIS allocation.

We encourage all our clients to come into our offices for assessments wherever possible, in Cairns, Townsville, Rockhampton, Bundaberg, Toowoomba and Woolloongabba. This will reduce travel costs that you need to pay under your plan, along with wait times for our services.

4. Once we have written our report recommending and describing the equipment you wish to purchase, we submit it to the NDIS for approval.

5. The NDIS will contact you when your equipment is approved, and they will add the funds to purchase the equipment into your portal. You should then advise us, and we can work with you to receive the equipment from the supplier, and ensure it is tailored to suit your needs as required.

6. If you have a question about when your equipment funding is going to be approved, you will need to talk to your NDIS Planner or Local Area Coordinator (LAC) who is managing this process.

Further assistance and supportWe have a dedicated NDIS Transition Officer and Intake Officer who can answer any questions you may have on the NDIS, Assistive Technology, quoting, assessments and payments.

Visit spinal.com.au/ndis for more of our tips. If you have any questions, contact our NDIS team today on 1300 774 625 or ndis@spinal.com.au.

NDIS tips from our Allied Health Service

“We encourage all our clients to come into our offices for assessments wherever possible”

8 THE ADVOCATE Now supporting you closer to home. spinal.com.au

WESTERN AUSTRALIA NEWS

As a lover of the outdoors, Perth resident and Spinal Life member Jean Gilbert says the beautiful beaches of Western Australia are well worth the visit.

But as someone with a physical disability, Jean (pictured) says the region’s beaches still have a way to go when it comes to accessibility.

“We have some really nice beaches but it’s quite rare to find any with wheelchair mats or accessible equipment,” she said.

“It seems almost a waste to have such nice beaches that aren’t accessible for residents and visitors with a disability.”

To help ensure everyone can enjoy a day at the beach, we recently planned

a community meeting focused around the current state, and future of, beach accessibility in Western Australia.

Held at the City of Perth Surf Life Saving Club on Tuesday 4 December, the community meeting invited Mayors and Council representatives to connect with Spinal Life members and community organisations from the region.

Executive Manager – Member Services Ross Duncan said the purpose of the meeting was to have a positive discussion around Western Australia’s beaches.

“We also look forward to a productive talk between members and Council

representatives to discuss effective planning to ensure Western Australia’s many wonderful beaches are inclusive of people with a disability,” he said.

Ross said a casual social event directly followed the meeting, providing attendees a chance to connect and see some beach equipment in action.

Manufacturers also showcased a range of beach accessibility equipment at the event as an example of what could be potentially used to improve Western Australia’s beaches.

“One of our key Advocacy Charter priorities is supporting accessible local communities and bridging the gap between local Councils and our members to ensure they can be heard,” Ross said.

“By keeping Western Australia’s beaches accessible, it will have a welcome impact on our members in the area while making the city a more attractive destination for tourists with a disability.”

Visit spinal.com.au/wabeaches to find out more. Western Australia event

focuses on beach accessibility

“One of our key Advocacy Charter priorities is supporting accessible local communities”

In June this year, we launched our member services in Western Australia, providing residents with spinal cord damage and related physical disabilities the chance to connect with each other and advocate for positive change in their communities.

We are hoping to grow our advocacy program in WA in 2019, along with other member services. Find out more about becoming a member, contact our Western Australia Member Liaison Officer Debbie Nobre on dnobre@spinal.com.au or on 0420 985 734.

SUMMER 2018 THE ADVOCATE 9

CHRISTMAS APPEAL

1800 672 427Contact us todayfor an obligation

free quote& demo!

Freedom Motors Australia introduces the all new latest modelKIA Carnival Freedom Van Wheelchair Accessible Vehicle Modification. Available as a Family (Wheelchair behind driver and Passenger seats),

Passenger (Wheelchair behind the middle row seats), Extra Long (2 Wheelchairs) and Self-Drive Transfer (Disabled person drives the vehicle

by transfer) Designs.Sizes are as follows: 1400mm Rear Entry and 1500mm internal Height.

www.freedommotorsaustralia.com.au

sales@freedommotorsaustralia.com.au

Reigne Dadey found out the hard way how much a spinal cord injury can impact something most people take for granted - breathing. She also knows she’s not alone, which is why she’s excited for the launch of an upcoming research project that uses singing and vocal training to help strengthen the respiratory muscles of people with a newly acquired spinal injury.

The Singing Cords project has been developed by researchers from The Hopkins Centre and internationally-renowned singer Tim McCallum, and is financially supported by Spinal Life.

Reigne, who sustained a spinal cord injury in 2015, recently discussed the benefits of supporting research to improve the quality of life for people with spinal cord damage, as part of our 2018 Christmas Appeal.

Christmas Appeal aims to help people with spinal cord damage breathe easier

Donations raised through the Appeal will go towards continued support of research programs that will benefit people with spinal cord damage, such as the Singing Cords project.

This also includes a recent study to identify access barriers to important health services, and an innovation working group using firsthand experience to explore new and unique solutions to improve the day-to-day life of people living with spinal damage.

Both of these programs are supported by Spinal Life, linking professional researchers with our members and clients to identify practical and innovative solutions.

In addition to supporting research, funds raised during the Christmas Appeal will also go towards services such as advocacy, to assist people with spinal

cord damage and ensuring they have an active voice.

If you’d like to do your part to improve the lives of people with spinal cord damage, visit spinal.com.au/donate – or share the link with your family and friends!

10 THE ADVOCATE Now supporting you closer to home. spinal.com.au

Permobil Australia is excited to introduce Dreamline Seating Solutions.

Create the seating system you choose.

ADJUSTABILITY WITHOUT COMPROMISE.

Email us for more information: info.au@permobil.com.

SUMMER 2018 THE ADVOCATE 11

Message from the Chair

With the year drawing to a close, I have been reflecting on the past 12 months and our achievements, and how they will shape the coming year.For the Board, the launch of our new Strategic Roadmap was a key milestone, with this document guiding our activities now and into the future.

As we shared in the previous issue of The Advocate, our goals for the year ahead include:

› developing our organisation and our team members

› becoming as efficient as possible, to ensure we continue to be financially sustainable in a changing landscape

› sharing our expertise on a national level to support more people with spinal cord damage

› completing our organisation’s transition to the National Disability Insurance Scheme (NDIS) and National Injury Insurance Scheme (NIISQ) funding schemes, and growing our service areas

› growing our membership strength to assist us in our advocacy efforts, plus creating and supporting an engaged community of peers.

› improving the lives of people with spinal cord damage through new rehabilitation and therapy services.

You will hear more about each of these goals over the coming months, through major projects including our Healthy Living Centre in Cairns, providing further support in Western Australia, along with research opportunities and advocacy activities.

Another 2018 highlight for me was the launch of our Advocacy Charter during Disability Action Week in September.

This Charter encompasses the principles that drive us in our advocacy efforts, along with our key priorities for the coming months.

Our aim is to work with and on behalf of our members on issues that matter most to them, whether it’s on a local, state or national level.

If you’re facing barriers in your community, we want to hear about them and support you to create change that improves your life, and the lives of others.

We are also focused on state and national issues, based on feedback from our members, and we encourage you to become involved as we campaign on a larger scale.

You can read more about the Advocacy Charter and our plans for 2019 on Page 12.

Reflections on the past year shine a light on the future

As we go to print, our 2018 Annual General Meeting is about to take place, and the results will be published in the next issue of The Advocate.

We also published our 2017-18 Annual Report to coincide with the AGM and the end of the financial year, which is available on our website if you would like to read more about our activities over the past year.

Until next time, I wish you and your loved ones all the best for the festive season, and I look forward to seeing you in 2019.

Alan Ashford Chairman

We launched our Advocacy Charter to mark Disability Action Week in September, which will guide our advocacy activities now and into the future.It’s all part of our mission to enable solutions for you to live an accessible, equitable and empowered life.

We created the Charter following feedback we have received from our members, along with current issues being experienced by people with a disability across the country.

In this issue of The Advocate, we will explore our upcoming advocacy work, and the priorities that we will focus our efforts on over the coming months.

Two of our members are also sharing more about their advocacy efforts, and how they are working with Spinal Life to make improvements on issues that matter most.

Advocacy CharterCHARTER FOR CHANGE

Our advocacy principles As an advocate for people with spinal cord damage, we will:

› support our members to advocate on their own behalf when possible, and advocate with or for our members when appropriate.

› work to identify and remove barriers to participation in mainstream services and the general community.

› advocate to all levels of government, organisations providing disability-related products and services, and other organisations with interests in physical disability.

› understand our current and future members’ needs and priorities through regular engagement on issues of importance to them.

› communicate our advocacy initiatives with our members and stakeholders, to provide an opportunity for interested people to become involved.

› provide feedback to members on advocacy efforts and the outcome of initiatives.

To read the full Advocacy Charter, along with our Position Statements on key issues, visit spinal.com.au/advocacy – and keep an eye on your email for updates about future campaigns.

COMMUNITY CONNECTIONS

12 THE ADVOCATE Now supporting you closer to home. spinal.com.au

Our new community connector for WA Jodi Gallon (left) meets with member facilitators Pat Allison (Bundaberg) and Tom Dutton (Moreton Bay). Our member facilitators help Spinal Life advocate and connect with different regions around Australia.

Accessible local communities

Accessible accommodation

› Planning to advocate to the State Government to play its role legislatively to mandate for residential accommodation to meet Liveable Housing Design Guidelines (at a minimum silver level, but preferably gold standard.

› Aiming to influence hotel and accommodation peak industry bodies to better understand how to improve the accessibility of their properties and how to make their accessible properties more discoverable by people with disability.

Our key priorities

› Continuing to support the development local volunteers (Facilitators and Community Connectors) to engage with their respective local government agencies, along with strengthening member involvement in initiatives to improve accessibility.

› Collaborating with local government for access to funding to address accessibility issues at the community level.

Employment › Working to increase the employment participation rates

of people with newly acquired spinal cord damage through return to work programs.

› Planning a project to raise awareness of the need for employment assistance programs for people with a disability.

Access to aids, funding and equipment

› Advocating on behalf of individuals, members and clients for access to appropriate, high-quality and innovative supports under the NDIS, and working to promote our knowledge base of Assistive Technology decisions and appeals.

› Working to allow access to the Medical Aids Subsidy Scheme (MASS) for individuals under the Aged Care system with complex equipment needs.

Research › Working to identify opportunities for Spinal Life Australia, and its members

and clients, to participate in research, ensuring that the research is reputable, scientific and relevant.

› Continuing to apply for and partner with other organisations to apply for funding to deliver and/or participate in research opportunities that will benefit members and the wider community of people with spinal cord damage.

Transport › Advocating for a nationally consistent Taxi Subsidy Scheme equivalent

to the benefit provided under the Victorian scheme, up to $60 per trip, to continue indefinitely and in conjunction with the NDIS.

› Advocating for more inclusive and comprehensive airline travel policies for people with spinal cord damage and other physical disabilities.

Health › Advocating for an accurate and reasonable distinction between health

conditions and disability within the NIS, to ensure that the NDIS funds disability-specific needs where appropriate, such as catheter changes and air-conditioning.

› Continuing to advocate for increased accessibility and inclusiveness of mainstream health services.

CHARTER FOR CHANGE

SUMMER 2018 THE ADVOCATE 13

CHARTER FOR CHANGE

14 THE ADVOCATE Now supporting you closer to home. spinal.com.au

When Kevin Cocks first arrived in Brisbane in 1985, he found himself in a city with no accessible buses, no accessible ferries and a quarter of the train stations accessible “at best”. Needless to say, he knew things had to change.

The Spinal Life member and former Queensland Anti-Discrimination Commissioner would spend the next 33 years vigorously fighting for accessibility and inclusion and defending the rights of Queenslanders with a disability.

“I took many things for granted before my spinal cord injury,” he said.

“After my injury, I realised that I now didn’t have the same rights or access as the rest of the population.

“It wasn’t just transport - with no building codes or obligation to be inclusive back then, I was excluded from a lot of venues and social activities.

“I knew we needed to create a new and better space for Queensland.”

Determined to make a difference, Kevin (pictured) joined the steering committee of Queensland Advocacy Incorporated (QAI), a legal and systematic advocacy non-profit organisation which advocates for vulnerable Queenslanders with a disability.

Over the next few years, Kevin would see some great progress made through the Queensland Anti-Discrimination Act (ADA) 1991 and the Disability Discrimination Act (DDA) 1992.

In 2011, Kevin’s advocacy efforts helped secure his appointment as the Queensland Anti-Discrimination Commissioner, where he would spend the next seven years pushing for fairness and inclusivity for all Queenslanders.

One of his proudest achievements was successfully challenging the lack of an accessible front entrance at the Brisbane Convention Centre.

This fight was assisted by Spinal Life members Bill Garsden and Robert Jones and later brought to wider media attention through the organisation’s Chief Government Advisor John Mayo.

“It wasn’t just about the Centre, it was about what the win represented, including having the Building Code of Australia deemed discriminatory at the time,” he said.

“People with a disability went from being forced to use the back entrance to being able to use the front door like everyone else.

“You can certainly see the symbolism there.”

After leaving the role in early 2018, he was employed by the Department of Transport and Main Roads to establish the Accessible Transport office, which aims to ensure accessibility is integrated as ‘business as usual’ in Queensland public transport’s everyday services.

“During my time in Brisbane, I’ve seen accessibility in our buses go from zero to 100% compliance and greater accessibility in our rail networks,” he said.

“Things are getting better each day, but we still have a long way to go.”

Kevin fights for a more inclusive Queensland

When member Bill Peacock moved to Bribie Island in 2006, he found there was very little support in the area for polio survivors. As someone passionate about raising awareness and advocacy for the late effects of polio, Bill worked with Spinal Life to establish a support group for Bribie Island’s polio survivors.

“I’ve had many different conversations with different groups who have been completely unaware that polio symptoms can return later in life,” Bill said.

“There isn’t much awareness out there which is why having a group of survivors to help and support each other and getting additional support from Spinal Life Australia has been extraordinary.”

As part of his mission to raise awareness of the late effects of polio, Bill has spoken with local and national organisations, politicians, councillors, businesses, service providers and members of the medical community, just to name a few.

Bill brings support for polio survivors at Bribie island

With Bill’s significant knowledge of the various funding programs available for people with a disability, he has broadened the Bribie Island group to be inclusive of people with other physical disabilities along with polio survivors.

“Advocacy for people with a disability is vital, especially with the roll out of the NDIS,” he said.

“It can be very difficult to navigate or get the best outcomes without some form of advocacy and I’ve seen a lot of serious

We advocate by assisting members to navigate often complicated complaints and appeals processes.

For instance, advocacy with a member who is an NDIS participant involves assisting them prepare and lodge the correct paperwork and evidence to support their concern.

If this involves a decision of the NDIS, we would assist a member to lodge an internal appeal of the decision and perhaps an external appeal of the decision through the Administrative Appeals Tribunal.

There are equivalent processes in most government programs and department, but each has unique requirements and timeframes.

Where the process for questioning a decision or advocating for a change is not so clear, we assist members to raise their issues through local Members of Parliament, directly with

How we advocate – our individual assistancethe heads of organisations or by raising awareness of the issue within their local community.

Advocacy may involve research or collecting relevant information and facts on rules and issues, drafting responses to correspondence or advising on the most effective course of action in any situation.

Sometimes a member will feel that they have been treated unfairly due to their disability but will not necessarily know if they can speak out or how best to do that.

We can assist with this as well, and advocacy in this instance would involve helping our members to understand their rights and how best to protect and uphold them.

Visit spinal.com.au/advocacy to find out more.

CHARTER FOR CHANGE

SUMMER 2018 THE ADVOCATE 15

issues constantly raised by members of the Bribie Island Spinal Life Network.

“The same goes for My Aged Care as well.

“When you have a disability, you face new and familiar challenges every single day.

“It’s important that people are aware of those challenges and that we push for a more inclusive and welcoming community for everyone.”

16 THE ADVOCATE Now supporting you closer to home. spinal.com.au

ADVOCACY IN ACTION

In August this year, an Inquiry was commissioned to investigate the Queensland Government’s procurement process for a fleet of New Generation Rollingstock (NGR) trains that failed to comply with disability legislation. We contributed our own submission into the Inquiry to put forward the concern of our staff and members, particularly that the NGR trains were put into commission despite glaring accessibility issues for passengers with a disability.

Spinal Life staff were also interviewed in the lead-up to the finalised investigation report, which was expected to be released by the Commissioner, Judge Michael Forde, on Monday 3 December as this issue goes to print.

In early 2018, Spinal Life created an online petition calling for accessibility to become a mandatory part of the procurement process for Queensland infrastructure, which received more than 16,400 signatures.

Our Chief Advisor – Government, John Mayo, has been following the NGR train issues very closely, helping to form a project working group. The working group has proposed accessible NGR train modifications to Queensland Transport and Main Roads, which are anticipated to be sent to the Queensland Cabinet for approval shortly.

Senate makes recommendation on mobility device regulationThe Senate Committee recently made two recommendations as the result of a Parliamentary Inquiry into the need for the regulation of mobility scooters and motorised wheelchairs.

Earlier this year, Spinal Life representatives attended a Senate Committee hearing as part of the Inquiry, stressing the difference between mobility scooters and power wheelchairs and how additional regulations could impact people with a physical disability.

The Inquiry explored recommendations including reducing speed limits for mobility scooters and motorised wheelchair users and a required licensing system.

The final Committee recommendations include encouraging the Australian Government to ensure adequate funding is given to undertake research and consultation to inform the establishment of a national regulatory framework for motorised mobility devices and retain the 10km speed limit.

The second recommendation was for Austroads (the association of Australasian road transport and traffic agencies) to consider simple and low-cost licensing and registration arrangements, as well as third-party insurance options for motorised mobility device users.

In our previous submission, Spinal Life advised the Senate Committee to look at Queensland as a nation-leading model of rules and regulations around motorised mobility devices.

Read our previous story on the Senate Inquiry in the Spring 2018 issue of The Advocate, available online at spinal.com.au/theadvocate.

Spinal Life expresses concern during NGR train investigation

Queenslanders with a disability are set to have better protection for their rights after a Human Rights Act for Queensland was introduced to Parliament on 31 October 2018.

The Act is modelled on the Victorian Charter of Human Rights and Responsibilities Act and will provide 23 provisions to protect human rights.

This includes recognition and equality before the law, right to life, protection from cruel or degrading treatment and freedom of association.

Human Rights Act introduced to Queensland ParliamentThe Act states that all Queenslanders have a right to be treated fairly, equally and with dignity protected in law.

Spinal Life Australia has been campaigning for a Human Rights Act to be introduced in Queensland for many years.

We previously welcomed the $2.3 million funding announcement towards the Act that was announced in June this year in the State Budget.

SUMMER 2018 THE ADVOCATE 17

ADVOCACY IN ACTION

WE SUPPLY, FIT, CERTIFY, TRAIN AND SUPPORT YOU ON YOUR CONTINUING JOURNEY

• wheelchair lifts & loaders• personal transfer hoists• swivel seats

• hand controls• left foot accelerators• spinner knobs & more...

WWW. REBENMOBILITY.COM.AU2/24 Carroll Street, Toowoomba QLD 4350 PH 1300 620 774 EMAIL info@rebenmobility.com.au

What is it? It’s an Accessible Portable Toilet trailer – and the photo gives you just an inkling of this innovative facility.It all started with Spinal Life developing a concept brief in 2016 and raising it for interest with Cairns Regional Council through Access Advisor Ian Chill, who is also one of our long-term members.

From there, we collaborated to prepare a national tender for construction and work on the detail design stage.

We knew that by mid-2019, more than 90,000 Queensland recipients of NDIS and NIISQ funding would have newfound capacity to participate in their communities, leading to increased demand for accessible portable toilets

The Accessible Portable Toilet trailer comprises:1 x Accessible unisex toilet plus a fold-out baby change table near the door (so no circulation space interference for mobility device users yet close to waste bin for parents)

1 x Ambulant toilet for people who are aging, have standing, lowering or balance issues.

4 x Standard single stall toilets

The facility is towed by truck to venues. It can be used for various outdoor events or to supplement sanitary facilities at indoor events.

Toilet waste can be either pumped from the tank into waste-carrying vehicles or the tank can be connected directly to a sewer.

Two workers can construct and deconstruct the facility. Once in place, no staffing required.

Initial road testing took place during the Commonwealth Games in Cairns.

Note: under Building law, this facility would be defined as offering seven (7) pans. This is because (A) an accessible unisex toilet is classified as offering two pans and (B), there is no exclusive use of an accessible unisex toilet or an ambulant toilet.

at festivals, conferences and outdoor events.

The latest national research shows the contribution accessible tourism now makes to the Australian visitor economy is $10.8 billion each year.

Therefore, having this type of facility available could prompt government and tourism operators to think more boldly about local outdoor events – and accessible tourism generally.

There is one trailer being used in Cairns for events, with plans to promote this facility to other Councils and tourist organisations throughout Australia.

To find out more, contact jmayo@spinal.com.au or phone 1300 774 625.

Giving you the best seat in the house… by John Mayo, Chief Advisor – Government

18 THE ADVOCATE Now supporting you closer to home. spinal.com.au

OUR HEALTHY LIVING CENTRE

The site of our Spinal Life Healthy Living Centre in Cairns is set to become a hive of activity, with construction now started on this exciting project.The $12 million Centre will bring specialist services closer to home for people with spinal cord damage and other physical disabilities across Far North Queensland, including accessible accommodation, allied health, a rehabilitation gym, hydrotherapy pool and community café.

We held an official ‘breaking ground’ ceremony at the site on the morning of Wednesday 26 September, which was

followed by an afternoon event to share more about the project.

The project is made possible with the Australian Government’s Building Better Regions Fund, which provides grants for projects that will create jobs, drive economic growth and build stronger regional communities.

The project will be brought to life by local builders Keir QLD, who share our vision for the innovative Centre.

The first part of the build is all about getting the ground works completed before the wet season starts.

This involves things like all the underground services, the base of the

Key features of the fully accessible centre include:

› seven purpose-built transitional and holiday accommodation units

› specialist services for people with spinal cord damage and related physical disabilities

› meeting spaces and community facilities including café, gym and hydrotherapy pool

› employment and training opportunities for the Cairns and Far North Queensland community.

lift, digging out for the pool, all the footings and getting the foundations ready to pour the ground floor slab.

Spinal Life Australia Chief Executive Officer Michael Powell said the Centre was in the perfect location, close to the Esplanade, Cairns Hospital and other health services.

“We’re excited to confirm that Keir QLD will join us to construct our Healthy Living Centre, which will put Cairns on the map as a health care leader for people with spinal cord damage and related physical disabilities,” he said.

“We’re bringing services closer to home for Far North Queenslanders, supporting them to reach their goals and improving their quality of life.”

The Spinal Life Healthy Living Centre will be built on the corner of Lake and Smith Streets, close to the Esplanade, Cairns Hospital and other health services.

Visit spinal.com.au/cairns to find out more.

We are continuing to raise funds to bring the Healthy Living Centre to life.You can make an impact by:

› Making a tax-deductable donation › Contacting fundraising@spinal.com.au

for legacy and recognition opportunities › Sharing this information with

your family, friends and networks.Visit spinal.com.au/cairns to find out more.

Construction begins on Healthy Living Centre

Artist impression

SUMMER 2018 THE ADVOCATE 19

Because there’s no place like home... We need to raise $1million to help bring the Spinal Life Healthy Living Centre in Cairns to life. Help us bring members of our community like Luke, closer to home.

Go to spinal.com.au/donate

Celebrating our Spinal Life Healthy Living Centre

OUR HEALTHY LIVING CENTRE

Below: Spinal Life team members and community leaders examine the Architectural Model; Warren Entsch MP and member Ian Chill officially unveil the model at the afternoon celebrations.

From top: Officially breaking ground were Spinal Life Australia Chairman Alan Ashford and CEO Michael Powell, Commercial Property Services Director Royce Slade representing builders Keir QLD, and Federal Member for Leichhardt, Warren Entsch MP; the Welcome to Country ceremony featuring the Minjil Dance Group.

20 THE ADVOCATE Now supporting you closer to home. spinal.com.au

BACK2WORK

When Kallangur youth pastor Josh Laack was admitted to the Princess Alexandra Hospital’s Spinal Injuries Unit with spinal cord inflammation, one of the nurses remarked that she had never seen a pastor in the Unit before. The Spinal Life member humorously responded, “the others must have been better at praying”.

Josh’s faith and sense of humour have helped him through one of the most difficult times of his life after he sustained a spinal cord injury from a mission trip in Uganda.

His trip ended up being unforgettable for the wrong reasons when he picked up a river parasite during a casual swim.

“I had an amazing time in Uganda but 10 months after I returned home, I started experiencing the most agonising pain, something I wouldn’t wish on my worst enemy,” he said.

“A river parasite had infected me with schistosomiasis which ended up doing irreversible damage to my spine, leaving me with a T11 level paralysis.”

For Josh, the biggest challenge was mental, not physical.

“When I found out I wouldn’t be able to walk, I just assumed my life as I knew it was over,” he said.

“I love being a youth pastor but it’s a very active and dynamic role and I assumed I’d never be able to do it again.”

Not only was Josh able return to work with some equipment assistance and support from our Back2Work program, he said he felt like a stronger leader than ever.

“I deal with a lot of at-risk youth in my role, many of whom have been through some very dark times,” he said.

“I’ve found going through a trauma of my own has helped me connect with them more and has allowed me to share my own experiences and how I worked through them.”

Through the Back2Work program, Josh was able to get some funding to make his workplace at Rivers Church of Christ more accessible, as well as funding for an all-terrain wheelchair and equipment

trailer for work trips.

“The modifications and equipment have really made it easier to return to the role; having an all-terrain wheelchair has been invaluable for trips and camps where you’re dealing with grassy or sandy environments,” he said.

“Honestly, I’m very surprised to still be doing what I’m doing, I really thought I’d never be able to be a youth pastor again.

“You have to remember there is always hope – even when you don’t feel there is, it’s always there.”

The Back2Work program is proudly supported by the Motor Accident Insurance Commission, in partnership with Griffith University and Metro South Hospital and Health Services.

Josh returns to leadership role after a casual swim changes his life

“The modifications and equipment have really made it easier to return to the role”

SUMMER 2018 THE ADVOCATE 21

BACK2WORK

2/452 Bilsen Road, Geebung

powermobility.com.au

The Power Mobility team has some of the most experienced, knowledgeable and understanding people in the industry. But most of all, we’re passionate about helping you get mobile. Our showroom is a one-stop shop for all your mobility needs including power chairs, scooters, walkers, lift chairs, homecare, MASS approved mobility aids, plus much more.We also offer expert after-sale service and repairs, both onsite and via our convenient mobile service. Plus, we can customise equipment to suit your individual needs.

Drop in to see our extensive range for yourself or visit powermobility.com.au anytime. Our team would love to help you get mobile!

Sales 07 3265 4663Service 07 3907 0569

VISIT OUR HUGE SHOWROOM AT GEEBUNG!

Since commencing in 2016, Spinal Life Australia’s Back2Work program has grown to the point it’s become too much for one person to handle!After receiving more than 110 new referrals to the program, we received additional funding from the Motor Accident Insurance Commission to employ a second Vocational Rehabilitation Counsellor, Lisa Moore.With Lisa on the team, we’re looking forward to being able to continue expanding the program and working with more members with newly acquired spinal cord injuries to help them return to work or study.The program was also showcased in a presentation during the combined 2018 Annual Scientific Meeting of the International Spinal Cord Society (ISCoS) and the Australian and New Zealand Spinal Cord Society (ANZSCoS) which was held in Sydney in September. We’ve also received interest in the program from a PhD student from Griffith University who has done a series of in-depth qualitative interviews with six participants to investigate the effectiveness of early intervention vocational rehabilitation for people with catastrophic injury.

Visit spinal.com.au/back2work to find out more.

Back2Work program moves from strength to strength in 2018

22 THE ADVOCATE Now supporting you closer to home. spinal.com.au

MEMBER REVIEW

My wife Stacey and I agree that our favourite memories as kids were of our family holidays; exploring new places and returning to our old favourites. So, naturally, as a young family, we want to create those same memories for our own children. As a family affected by disability though, it is more than frustrating when our holiday destinations are governed firstly by their accessibility, rather than the destinations themselves.

We recently enjoyed the opportunity to visit Mudjimba Beach on the Sunshine Coast, where we stayed at Access Mudjimba Shores, a newly renovated one-bedroom holiday apartment.

From the level access to the ‘front’ door via a side entry gate, to the ever-important accessible bathroom, everything just worked.

Mudjimba was a pleasantly modern and surprisingly ‘hip’ little beach suburb, with a quaint strip of restaurants, cafes, and a bar just two doors up from our apartment.

We definitely recommend a cocktail and afternoon nibbles at High Tide and, next morning, a coffee and cronut from The Island Surf and Espresso. Tick those off your list and you will be well on your way to having enjoyed a good holiday!

Immediately across the road from your accommodation and adjacent eateries is the Mudjimba Surf Club and parkland.

The park is great for entertaining children with an impressive playground, but the highlight is the beach.

For those who want to get their toes wet and sandy, the Mudjimba Surf Club has two beach wheelchairs available for use. Simply check-in with the lifeguard on duty and they’ll arrange for them to be available.

For Dane’s full experience of his stay at Access Mudjimba Shores and his time at Mudjimba Beach, visit accessmudjimbashores.com and click on ‘review’.

A quick guide to finding accessible accommodationWe recently held an event at our Brisbane office which focused on accessible travel and accommodation, as part of our 2018 Wellbeing Series.

Members Greg Hayden and Charlie Ford brought along their own accessible caravan and trailer to display, while travel agent Fiona Donaldson and experienced traveller Lindsay Nott shared their experiences and advice.

Below are some of the tips about booking accommodation that were shared on the day.

Property considerations

Accessibility › Is there step-free access from the street

and carpark?

› Will lifts accommodate my wheelchair and equipment?

› Are the public spaces (pools/restaurants/bars/meeting rooms) accessible?

› How wide are hallways, doors and ramps?

› Are the room dimensions, including bathroom (toilet position – left or right) and balcony, suitable?

› Is there room to enter, turn and navigate the space?

Bed › What is the height of the bed, and is there

sufficient clearance for transfers and equipment, including hoists?

Reception › What are the operating hours?

› How will support workers gain access?

Parking › Will I be guaranteed an accessible space with

room to enter and exit my vehicle?

Other › When hiring equipment, check the specifications

closely for example, the weight capacity of hoists or the types of slings.

› Check the emergency plan upon arrival at your place of accommodation, including evacuation procedures and alternatives to lift access.

Keep an eye on Facebook and our website for details on upcoming events in the Wellbeing Series.

Dane’s trip to Mudjimba Beach

SUMMER 2018 THE ADVOCATE 23

Because ‘your more’ is your ownThe NDIS is here and we’re ready to support you. Our team is dedicated to finding unique solutions across a range of specialist services to suit you:

› Personal care and lifestyle support › Mobility, seating and equipment prescriptions › Occupational therapy › Home modifications and driving assessments › NDIS Plan Management

and Supports Coordination*

*Check availability in your location.

24 THE ADVOCATE Now supporting you closer to home. spinal.com.au

PEER SUPPORT

Peter Harre calls it the “lightbulb moment” and says it’s the best part of his job. It’s the moment where someone with a newly-acquired spinal cord injury realises their injury may present a lifetime of challenges, but it’s still a life worth living.

Peter is a member and founder of our Peer Support team, a team of people with lived experience with spinal cord injury who dedicate their time to helping patients at Princess Alexandra Hospital’s Spinal Injuries Unit come to terms with life after injury.

“When people sustain paraplegia or quadriplegia through an injury, it’s all too common for them to focus on what they can’t do,” he said.

“The Peer Support team works with patients and their families to change their

mindset and open their eyes up to what is still possible.

“We’re constantly seeing people go from feeling like their life is over to eventually seeing the light at the end of the tunnel and realising that despite a new set of challenges, life still goes on.”

Peter said that realisation was something he had to find out for himself after sustaining paraplegia in a motorbike accident in 1987.

In 2004, he was asked by Spinal Life to help establish the Peer Support team which has since helped an estimated 1,200 people with newly-acquired injuries and their families, both in the Unit and in the community.

Peter said a change of attitude can go a long way in how people with a physical disability are perceived.

“I think a lot of people assume that if you’re in a wheelchair, you can’t be independent or that your life must be miserable,” he said.

“While we might need a bit of support at times, we still live our own lives just like anyone else.”

For more information on Spinal Life’s Peer Support team, visit spinal.com.au/peer-support.

“The Peer Support team work with patients and their families to change their mindset and open their eyes up to what is still possible”

Peer Support team guides patients in life after spinal injury

SUMMER 2018 THE ADVOCATE 25

“Of course, as an athlete, you demand a lot from your equipment. The same goes for catheters. You want the best material”

Peter Genyn, 40, SCI

The Coloplast logo is a registered trademark of Coloplast A/S. © 2018-06 CON630. All rights reserved Coloplast Pty Ltd, PO Box 240, Mount Waverley, VIC 3149 Australia.

Flexible, private and hygenic.SpeediCath Flex is designed to make every step of catheterisation easy.The 44cm catheter has a dry sleeve that enables for hygienic handling through the urethra.

To request a free sample today

Free sample

1800 653 317 www.coloplast.com.au/flex

Discover SpeediCath® FlexDesigned to make every detail easier

CON630-A4.indd 2 25/06/2018 5:06:27 PM

26 THE ADVOCATE Now supporting you closer to home. spinal.com.au

WORLD POLIO DAY

Over 40 polio survivors from across Queensland gathered at our Brisbane office on 24 October to mark World Polio Day.Attendees of the booked-out event were able to meet with fellow survivors and listen to several guest presenters, including international polio expert Dr Richard Bruno.

World Polio Day is held on the birth date of polio vaccine pioneer Jonas Salk and commemorates the progress made in eradicating the disease world-wide.

The event was officially opened by Governor of Queensland and our Patron, His Excellency the Honourable Paul de Jersey AC (pictured above).

“When I was a boy, polio caused a lot of devastation to the lives of many Australians,” His Excellency said in his opening speech.

World Polio Day event brings together polio survivors

“I still remember receiving the Salk vaccine when I was in school.

“While Australia was declared polio free in 2000, the terrible experiences with the disease are seared into the memory of many people across the country.”

His Excellency’s opening remarks were followed by a presentation on electrodynamics from Dr Bruno, regarded as one of the world’s leading experts of the disease, who presented via video link from the United States.

The event also featured guest presentations from end polio advocate Susanne Rea, Spinal Life physiotherapist Anthony Nakhle and University of Queensland speech pathologist Andrea Whitehead.

Susanne provided an update on global polio eradication initiatives, Anthony discussed how physiotherapy can support people with the late effects

of polio and Andrea talked about how speech pathology can assist in improving swallowing and breathing in polio survivors.

The event was also streamed online for people who could not attend and gathered interest from people throughout Australia and overseas, including the United States, the Netherlands, the United Kingdom and Mexico.

For more information on the late effects of polio and Spinal Life’s Post Polio Networks, visit spinal.com.au/polio.

“When I was a boy, polio caused a lot of devastation to the lives of many Australians”

SUMMER 2018 THE ADVOCATE 27

MEMBER UPDATE

Come and share your experiences and discuss issues that matter to you with locals in your community through our networks across Australia.

Spinal Life NetworksBribie Island: Contact Bill Peacock on 0403 686 998. Combined with Post Polio Network.

Brisbane: 11am, first Wednesday of the month. Contact Bill Simpson on 0412 729 843.

Bundaberg: 10.30am, third Tuesday of the month. Contact Pat Allison on 4153 1005.

FNQ (Cairns): Contact Del Childs on 4032 5379 Combined with Post Polio Network.

Fraser Coast: 12pm, third Wednesday of the month. Contact Brian Willcox on 4121 4358.

Mackay: 12pm, first Friday of the month. Contact Debra Reaves on 0487 021 735.

Moreton Bay: 1pm, first Wednesday of the month. Contact Tom Dutton on 0448 949 910.

Rockhampton: Second Thursday of the month. Contact Jeanette Kretschmann on 1300 774 625.

Toowoomba: 12pm, third or fourth Friday of the month. Contact Wendy Adams on 0422 799 580. Combined with Post Polio Network.

Western Australia: Community Catch-ups. Contact Debbie Nobre on 0420 985 734.

Post Polio NetworksBrisbane: Contact Jeanette Kretschmann on 1300 774 625.

FNQ (Cairns): Contact Joy Hay on 4055 5795. Combined with above Spinal Life Network.

Gold Coast: 10.30am, second Monday of the month. Contact Lyn Glover on 0448 206 856 or Joan Radanovic on 0413 178 073.

Rockhampton: first Thursday of every month. Contact Robynne Clifton on 0473 576 107 or Anne Guthrie on 0407 116 035.

Sunshine Coast: 10am, second Friday of the month. Contact Cathy Newman on 5447 6608.

Toowoomba: Combined with above Spinal Life Network.

Townsville: 2pm, second Sunday of every second month (Feb, April, June, Aug, Oct, Dec). Contact Eric Collins on 4729 0275.

Transverse Myelitis NetworkContact Louise Remilton on 0414 254 531.

Spinal Life Member Meetings

Member warns to watch out for dodgy drivers Brisbane member Robert Montocchio wants Spinal Life members to be aware of potential fraudulent drivers when dealing with public transport.Robert recent dealt with a Maxi Taxi driver who put the meter on immediately upon his arrival.

When the member disputed this, the driver advised that because the trip was booked via an app, the driver does not get the $20 loading fee.

After alerting Spinal Life, we discussed this issue with the taxi company who advised that the driver was incorrect and using an app does not interfere with the $20 loading fee at all.

The taxi company passed on free taxi vouchers to Robert as compensation for the incident.

It’s important to be aware of your rights, including the right to be fully secured in a taxi before the meter is turned on for passengers using the Queensland Government’s Taxi Subsidy Scheme. It also helps to keep a receipt of your journey to assist in any disputes or issues that may arise.

Earlier this year we developed cards for members to hand to drivers who turn on the meter before the passenger and their chair are fully secured, informing them of correct regulations.

Visit spinal.com.au/taxicard to download the card.

Ipswich network grows communityTo grow our member community, we recently established a new Ipswich network, with regular monthly meetings commencing in September.

The Ipswich Spinal Life Network is led by Community Connector Eric Rushton, a locally-based advocate for people with disabilities who has helped champion accessibility, education and awareness for people living with spinal cord damage and related physical disabilities, including the late effects of polio and transverse myelitis.

So far, members have discussed topics including making Ipswich more accessible and current advocacy efforts underway at Spinal Life, as well as heard from a guest speaker from the University of Southern Queensland.

If you would like to join the Network, you can contact Eric on 0403 191 698 or erushton@team.spinal.com.au.

28 THE ADVOCATE Now supporting you closer to home. spinal.com.au

POST POLIO

When the carer and the person with a disability need a break.

•Experienced staff •Foxtel and Wi-fi•All meals etc •Five minutes to Petrie Train station

When Gold Coast polio survivor Shirley Langford-Wilson experienced the symptoms of the disease returning decades after her initial recovery, her doctor said she had never heard of anything like it.

But Shirley is not alone – she’s one of the many polio survivors to experience a return of polio symptoms later in life.

After she started experiencing increased fatigue and breathing difficulties from the age of 49, Shirley said she

Shirley said her entire perspective changed when she attended the first Spinal Life Gold Coast Post Polio Network meeting 11 years ago.

“I learnt so much – I can’t explain what a relief it was to know my breathing issues were a result of the late effects of polio,” she said. “I’ve managed to get a much better handle of what I’m going through and I feel so grateful to be a part of the network.”

Shirley was 14 and living in England when she was first diagnosed with polio and managed to catch a lucky break when her usual GP went on holiday.

“His replacement was a younger guy who had just graduated and his final semester subject just happened to be poliomyelitis,” she said.

“I was lucky that he could immediately diagnose my condition, allowing treatment to begin early. “Of course, treatment then meant six weeks of isolation – polio was very misunderstood and was treated with great caution and avoidance.”

Shirley said she hoped to raise more awareness, especially the impact the late effects of polio can have on the level of anaesthesia required before surgery.

Spinal Life has recently developed a medical alert card and guide for GPs to raise awareness.

Rehabilitation specialist Dr Stephen de Graaff will join us via video link on 12 March 2019. Invitations to attend in person or via video link will be sent soon.

found it difficult to find doctors with any experience with the now nearly-eradicated disease.

“It’s come to a point where doctors who were there during the polio epidemics are now retired and the younger doctors may have never come across it before,” she said.

“So often you get told that your fatigue and other symptoms are just a result of old age or a possible flu.”

Shirley connects with and learns from other polio survivors

SUMMER 2018 THE ADVOCATE 29

TRANSVERSE MYELITIS

GLENN MOORE UNITS- HOBART, TASMANIA Specialised Self-Contained Accomodation for People With Physical Disability

• Ceiling Hoists• Smoke Free• Free Wifi• Linen Supplied

• Free Onsite Parking• Easy Access Bathrooms• Large Open Plan Living Areas• Reverse Cycle Air Conditioning

Glenn Moore Units are close to transport, shopping centres, entertainment venues, sports grounds and medical facilities. Located 15 minutes from the Hobart waterfront and CBD, and 10 minutes from MONA. Why wait? BOOK NOW.

(03) 6272 8816 admin@paraquadtas.org.au 26-28 Tolosa Street, Glenorchy TAS 7010

What started as a sore neck and weak shoulder in March 2014 would inexplicably start to spread down the left side of Roger McQuitty’s body over the next few months.It would take nearly a year of misdiagnoses, including being incorrectly advised he had cancer, before Roger would realise exactly what was going on.

Roger was eventually diagnosed with transverse myelitis, a rare neurological condition that inflames the spinal cord, often causing reduced mobility, muscle weakness and pain.

“In the months following my first visit to the doctor, I would have X-rays, MRIs, pieces of my lung taken out, a cancer diagnosis that turned out to be incorrect and they still weren’t sure what was happening,” he said.

“I had an anomaly in my spinal cord which I was told was a tumour which I was told was a cancerous tumour – it wasn’t until I underwent neck surgery that it was discovered the lump was swelling from transverse myelitis.”

While the former soldier lives with the condition every day, he still considers himself one of the lucky ones.

“I can still stand – I’m 6’2” so I like to stand,” he joked.

“But really, I know things could be worse. If the initial diagnosis of a cancerous tumour was correct, who knows how things could have ended up.

“I’ve always been an active person and while that’s definitely been impacted, I still manage to go to physio and do martial arts three times a week.

“There isn’t much use of thinking about how things could be better or worse – it is what it is so you just need to crack on.”

Roger is part of Spinal Life’s Transverse Myelitis Network, which connects Australians living with the condition and holds both social and official events each year. Visit spinal.com.au/myelitis or call 1300 774 625.

A sore neck leads to diagnosis of rare condition

“There isn’t much use of thinking about how things could be better or worse – it is what it is so you just need to crack on.”

30 THE ADVOCATE Now supporting you closer to home. spinal.com.au

MEMBER REVIEW

Spinal Life member Charmaine Idris shares her experiences attending the production of YUMMY, held at the La Boite Roundhouse Theatre as part of the 2018 Brisbane Festival.

Venue accessibilityThis was the first time I attended a performance at the Roundhouse Theatre, so I chose to travel by taxi, which was able to park out front. The Roundhouse Theatre is located on the ground level and is just a short push from the paved car park.

Next to the main entrance of the theatre, there is one accessible toilet which was a fair size, with manual access to open the door, a handrail on the left side and a wide entry for larger mobility devices.

On the night that YUMMY was being performed, my designated seating was also on the ground floor. I was able to navigate to my seat easily as the aisles were fairly wide. I transferred into my seat and they stored my wheelchair until the end of the show. I was seated first and chose to exit last due to a near full house.

Staff were extremely helpful assisting me with picking up my tickets from the box office, showing me where the toilet was, making sure I was comfortable and ensuring that my wheelchair was returned as soon as the crowd eased off.

The Roundhouse Theatre also has a raised platform at the top of the theatre for wheelchair users, which is accessible by a lift. Additional seats can be added to accommodate guests, with space permitting.

About the showI’ve been wanting to watch YUMMY ever since it premiered in 2015. My opportunity came about when the iconic Brisbane Festival announced that YUMMY would be staged as part of this year’s splendid program.

The winner of several prestigious awards and internationally acclaimed for its super talented cast, YUMMY is a dynamic show inspired by drag, driven by music, interspersed with circus and capped off with a whole lot of naughty (but nice) humour.

From start to finish YUMMY is a visual feast of creative routines and stunning costume changes. It had me laughing, cheering and gasping as the show unfolded with hairdos, make-up and costumes that would make the likes of Lady Gaga envious.

An eclectic soundtrack which comprised of a mix of new and old pop songs (ABBA being one of my favourites) accompanied the multi-talented cast as they lip-synced, sashayed and vogued their way across the stage in a series of upbeat dance routines that were performed on outrageously high heels the size of which impressed this mere mortal no end.

Visit 2019.laboite.com.au/accessibility to find out more.

YUMMY, Brisbane Festival 2018

SUMMER 2018 THE ADVOCATE 31

PERSONAL SUPPORT WORKER PROFILE

C

M

Y

CM

MY

CY

CMY

K

20180122 The Advocate JAN 180 x130 OL.pdf 1 22/01/2018 5:30:45 PM

Kay England is not a fan of pulling the traditional Aussie ‘sickie’ – in her 15 years as a Personal Support Worker for Spinal Life Australia, she’s only had three days of sick leave.“I’m not sure how I pulled that off,” Kay remarked about her one-every-five-years sick day average.

“I remember Dad used to say you can take sickies when you’re dead – that always stuck with me.”

As a Personal Support Worker, Kay aids people with spinal cord damage in their day-to-day tasks, such as helping with transfers to and from bed.

Kay has been with Spinal Life for 15 years after working in nursing services for many years.

“I was working at a nursing service previously and some of the people there were members of Spinal Life,” she said.

“I heard them talking about some of the great work the organisation did so when I finished at that role, I decided to go for a support worker position with Spinal and have been there ever since.”

Kay said she can’t explain exactly why she decided to pursue a career in nursing services and support work.

“All I know is that when I started doing it, I really enjoyed it,” she said.

“I just enjoy helping others, it feels like a right fit for me.

“If I didn’t enjoy it, I guess I wouldn’t have been doing it for so long!”

Kay said after a long and enjoyable career in support work, she was looking towards retirement in three years’ time.

“It will feel strange not working but it means I can travel more and spend more time with my family and friends,” she said.

If you know anyone who would like to join our team of Personal Support Workers and make a difference in the lives of our clients, visit spinal.com.au/career.

Kay finds a fulfilling career in helping othersGeneral Manager – Statewide Operations Greg Murphy presents Kay with her Certificate of Appreciation

32 THE ADVOCATE Now supporting you closer to home. spinal.com.au

MEMBER REVIEW

Using his firsthand perspective as a person who has quadriplegia, Bryan reviewed the accessibility of the events and shared his feedback with our advocacy team and event organisers.

Carnival of Flowers The Toowoomba Carnival of Flowers is an iconic Queensland event, held over 10 days in September with stunning floral displays throughout the city’s parks and gardens.

As I child I remember the Carnival to be the biggest entertainment for the whole family, that was not to be missed.

This year I chose a different location to watch the street parade and it will be the spot that I go back to next year, as the kerb was elevated making my viewing angle higher and the big trees shaded me for the entire time.

This location was close to an accessible car park, plus the coffee and drinks tent was in the church grounds directly behind me, and the local radio station was broadcasting commentary directly across the street.

The Foodie Tour My wife Julie and I decided to live it up and go on the Friday Progressive Foodie Tour, which involved a bus ride to three separate restaurants; sunset drinks and canapés at Urban Grounds Café, mains at Inbound Restaurant adjoining the historic Railway Station and a decadent dessert at Encores Restaurant.

As each location was within five minutes of each other, ensuring the bus was accessible was not a concern for us and so we did not notify the organisers early enough of my requirements prior to the event.

When we arrived at the meeting location, I asked the driver if the coach was wheelchair accessible, and he informed me that he would have brought the accessible bus if he had been notified in advance.

I was happy to drive the short distance to our destinations, so I was not worried, but next time would advise when booking a tour involving transport.

All three venues were easily accessible. The toilet at Urban Grounds Café was a bit tight but manageable, which is good considering it is a very old large home converted to a restaurant.

I’ve found the local Council has been very receptive to my positive approach to feedback, with access improving every year in the Toowoomba area and at the events.

Cheers and see you at next year’s Toowoomba Carnival, where I will most likely be at the Queens Park Food and Wine Festival, listening to chart-topping bands while enjoying a few ales.

Image courtesy of Tourism and Events Queensland

Toowoomba Carnival of Flowers and Foodie Tour

Spinal Life member Bryan Flemming recently attended the Toowoomba Carnival of Flowers and a gourmet Progressive Foodie Tour held as part of the celebrations.

SUMMER 2018 THE ADVOCATE 33

REGAIN YOUR FREEDOM... Ƚ DISABILITY VEHICLE HIRE & SALES

Ƚ GENUINE FRIENDLY SERVICE Ƚ REGISTERED NDIS PROVIDER

Phone 0456 017 779 for your next holiday hire or purchase

A bit of early morning rain didn’t stop the Spinal Life Australia team from finishing the 2018 Bridge to Brisbane fun run in late August. Participants ran, walked or wheeled through the 5km or 10km course and raised more than $2,500 to go towards supporting people with spinal cord damage or related physical disabilities.

The 22-person team was composed of Spinal Life members and clients, staff and their friends and family.

The annual Bridge to Brisbane event is Queensland’s biggest fun run, attracting tens of thousands of participants each year.

Spinal Life member and participant Natasha Price said even with the rain, it was an enjoyable morning.

“We were actually pretty lucky – despite a wet course, it didn’t start to really rain until after everyone reached the finish line (for the 10km event),” she said.

“It was a fantastic time; it was my third year doing Bridge to Brisbane but my first with the Spinal Life Australia team.

“It’s a great event for me personally; being able to complete the 10km course is a reminder of how far I’ve come with my injury over the past few years.

“I’ll absolutely be doing it again next year.”

The 2018 Bridge to Brisbane event saw 30,000 participants raise more than $750,000 for Queensland charities.

Spinal Life team brave the rain at 2018 Bridge to Brisbane

Clockwise from top: The Spinal Life team;

member Natasha Price and her mother take

part; Jason McGregor and Sam Carter.

BRIDGE TO BRISBANE

34 THE ADVOCATE Now supporting you closer to home. spinal.com.au

RESEARCH

Symposium focuses on innovative solutions The Hopkins Centre recently held its second annual ‘Bold ideas, better solutions 2018’ symposium in Brisbane.

The symposium highlighted the value of collaborating on research, with ‘enhancing the experience of rehabilitation’ as the theme of the event.

The event provided health professionals and researchers with the opportunity to showcase, connect and share new ideas and experiences; focusing on innovative solutions that enhance the health and wellbeing of people with long-term and complex rehabilitation needs, and their support networks.

Guest speakers included our Peer Support Team Coordinator Peter Harre, who spoke about research examining barriers to accessing health services in the community.

The Hopkins Centre is a joint initiative of Griffith University and the Metro South Hospital and Health Service, in partnership with the Motor Accident Insurance Commission, Synapse, Spinal Life Australia, and Health Consumers Queensland.

Visit hopkinscentre.edu.au/bibs2018 to find out more.

Singing program aims to help people with spinal cord damage breathe a little easier

Internationally-renowned singer Tim McCallum is launching a new peer-led program in partnership with The Hopkins Centre, which is exploring using vocal training and singing to strengthen the respiratory system of people with spinal cord injuries.Titled Singing Cords, the program is proudly supported by Spinal Life Australia, and will be conducted with Metro South’s Princess Alexandra Hospital.The pilot study will investigate whether peer-led group singing may improve respiratory functions for people with spinal cord damage, along with breath support for voice and quality of life outcomes for people who have been recently injured or had their injury for a number of years. Researchers and clinicians at The Hopkins Centre will be working with those involved in the Singing Cords program, to look at introducing singing as part of rehabilitation in hospitals.The program is expected to be launched early next year, with the results to be published afterwards.

Visit hopkinscentre.edu.au/podcast/singing-cords-program-20 to watch the launch video.

Research Committee holds first meeting As part of our renewed strategic direction, a key goal is to engage more in research to improve the lives of people with spinal cord damage and the wider community.

Through partnerships with The Hopkins Centre and other leading research institutions, there are more opportunities than ever being presented to us.

To oversee this, our new Research and Innovation Committee held its first meeting at our Brisbane office in October, including members and staff from our Business Development, Allied Health and Member Services teams.

The meeting outlined the purpose of the Committee, and looked at ways to facilitate Spinal Life’s involvement in projects, along with how to connect with innovative and ongoing research.

The Committee will officially meet quarterly, along with discussing research opportunities as they arise, and will be providing regular updates to members.

SUMMER 2018 THE ADVOCATE 35

Inspired. The way

travel should be

Part of the House of Travel Group ACN: 113 085 626 Member: IATA, AFTA, CLIA

Fiona DonaldsonYour personal travel manager

M: 0403 868 746 E: fiona.donaldson@travelmanagers.com.autravelmanagers.com.au/FionaDonaldson

Planning your holiday should be as exciting as

your time away.

Hi, I’m Fiona, a personal travel manager with over 20 years’ experience in the travel industry.

I have insight into the travel needs of a person with a disability, as I am a wheelchair user myself, however I am available to help anyone with their travel plans.

Using years of knowledge and resources to secure the most competitive rates, plus my natural ability to go the extra mile, ensures that all my clients receive the highest quality service. For a tailor-made itinerary that’s designed for your way of travel, contact me today.

Rosemary Hawkins 10.10.1956 – 22.09.2018

Rosemary Hawkins was born in Gympie, the youngest of four children, with her father the headmaster of the local school.

They had no power, no phone and no car in those early days.

After relocating to Ingham, the family then moved to Townsville in 1963, where Rosemary’s mother started teaching piano lessons and their father taught at the Currajong School, which Rosemary attended and often manipulated him into doing her homework. She attended Brownies, then Girl Guides and learned piano and cornet.

Stories from her school life show that even back then, Rosemary never did see the point of following rules when they could not be validated to her.

At the end of Year 10, Rosemary commenced work at the Townsville Hospital as a cadet and completed her Enrolled Nursing when was 17.

She then met Don Hawkins and they got married and had four children, Andrew, Sharon, Diane and Allan,

Farewell to dedicated member before she commenced work at The Good Shepherd, specialising in dementia care at which she excelled.

When Rosemary was no longer able to do paid work, she did volunteer work for charities, including Leisure Accessible, an organisation that had an accessible boat called ‘Rosie’ (named after her) so people with a disability could go fishing or just for a cruise.

Rosemary was a great advocate for the community who would stand up for what she knew was right and what was needed. She helped to survey restaurants and businesses for accessibility and how to improve services.

Her great loves were her many pets, particularly dogs and birds, but when she became a grandparent she took her role of spoiler very seriously. She would stockpile gifts for all her grandchildren over the year, and had a room dedicated to toys and clothes for them. She was looking forward to grandbaby number 10 who is due soon.

Rosemary had a wicked sense of humour which not everyone understood when they first met her.

A typical image of her is a bird perched on the back of her wheelchair, a grandchild on the footplates in front of her and a dog by her side.

Rosemary will be greatly missed by all the Spinal Life team, especially in our Personal Support and Home Care Services, as well as our members and clients, as she was very involved in a lot of events over the last 24 years. Not the least that will be missed is her challenging the staff and keeping us on our toes!

36 THE ADVOCATE Now supporting you closer to home. spinal.com.au

SOCIALS

Members mark World Polio Day Bribie Island Spinal Life Network Facilitator Bill Peacock speaks at the event; catching up over lunch were Karen Turner and Elaine Hans; and Bruce and Lyn Glover with Judy Gibbons.

Top left and downwards: Karen Matheson, Gail Ganly, Lynn Barnes, Grant Chandler, Gail Harris, Maryanne Fullalove; Bribie Island Spinal Life Network meeting; Bundaberg Spinal Life Network event, featuring an exercise physiologist presentation; Townsville Post Polio Network – Eric Collins, Jo Williams, Brian Krebs, Doreen Adkins, and Syd Collins.

SUMMER 2018 THE ADVOCATE 37

OUR COMMUNITY

Active Adaptive

Clothing and Accessories

Australian Design & Made

Phone: 0402 917 043narelle@activeadaptive.com.au

www.activeadaptive.com.auwww.splittbacks.com.au

Gym Wear

Swim Wear

Street Wear

Palmar Pocket

Push Mitts

Daily Living Accessories

These patterns are inspired by the OT’s at the PA and Talbot

Hospital Spinal Units

Active Adaptive

Clothing and Accessories

Australian Design & Made

Phone: 0402 917 043narelle@activeadaptive.com.au

www.activeadaptive.com.auwww.splittbacks.com.au

Gym Wear

Swim Wear

Street Wear

Palmar Pocket

Push Mitts

Daily Living Accessories

These patterns are inspired by the OT’s at the PA and Talbot

Hospital Spinal Units

Active Adaptive

Clothing and Accessories

Australian Design & Made

Phone: 0402 917 043narelle@activeadaptive.com.au

www.activeadaptive.com.auwww.splittbacks.com.au

Gym Wear

Swim Wear

Street Wear

Palmar Pocket

Push Mitts

Daily Living Accessories

These patterns are inspired by the OT’s at the PA and Talbot

Hospital Spinal Units

Active Adaptive

Clothing and Accessories

Australian Design & Made

Phone: 0402 917 043narelle@activeadaptive.com.au

www.activeadaptive.com.auwww.splittbacks.com.au

Gym Wear

Swim Wear

Street Wear

Palmar Pocket

Push Mitts

Daily Living Accessories

These patterns are inspired by the OT’s at the PA and Talbot

Hospital Spinal Units

Active Adaptive

Clothing and Accessories

Australian Design & Made

Phone: 0402 917 043narelle@activeadaptive.com.au

www.activeadaptive.com.auwww.splittbacks.com.au

Gym Wear

Swim Wear

Street Wear

Palmar Pocket

Push Mitts

Daily Living Accessories

These patterns are inspired by the OT’s at the PA and Talbot

Hospital Spinal Units

Active Adaptive

Clothing and Accessories

Australian Design & Made

Phone: 0402 917 043narelle@activeadaptive.com.au

www.activeadaptive.com.auwww.splittbacks.com.au

Gym Wear

Swim Wear

Street Wear

Palmar Pocket

Push Mitts

Daily Living Accessories

These patterns are inspired by the OT’s at the PA and Talbot

Hospital Spinal Units

GYM WEAR SWIM WEAR

STREET WEAR PALMAR POCKET

PUSH MITTS DAILY LIVING

ACCESSORIES

These patterns are inspired by the OT’s at the Princess Alexandra Hospital

and Talbot Hospital Spinal Units

For most people, retirement is an opportunity to relax and enjoy a well-deserved break.For 80-year old Eddie Ngenda, it’s a perfect time to go run some marathons.

After spending 53 years as a nurse at the Princess Alexandra Hospital, most of them in the Spinal Injuries Unit, Eddie celebrated his retirement with friends, staff and patients during ceremony at the Unit in late September.

While many would argue he’s earned a bit of rest after his half-a-century tenure at the Unit, Eddie shows no signs of slowing down.

“While I’ve finished up at Princess Alexandra, I plan to continue volunteering at Logan Hospital,” he said, on his retirement plans.

“I also plan to continue marathon running – it’s good for me, and keeps my body toned!”

“Of course, it will be good to spend more time with my wife and family.”

Eddie estimated he spent around 35 years of his 53-year tenue supporting patients with newly acquired spinal cord injuries at the Spinal Injuries Unit.

“I’ve very much enjoyed my time at the Unit, I like looking after people and I’ve been able to work with a great team,” he said.

“A spinal cord injury can happen to anyone and at any time – it’s not a choice.

“It can be a very challenging time for people at the Unit so it’s important to work with the patients and let them know you’re there to help.”

Spinal Injuries Unit nurse retires after 53 years

Eddie pictured with Peer Support Officer Col Mackereth

38 THE ADVOCATE Now supporting you closer to home. spinal.com.au

Upcoming events

Follow us on Facebook (facebook.com/spinallifeaustralia) or Twitter (twitter.com/spinallife)

Don’t miss out on the latest news and events!

About our services We are here to support you to find ‘your more’, as part of your trusted team for life.

NDIS Plan Management - Financial Administration and Supports Coordination Our experienced Transition Officers can help you navigate the NDIS and assist with pre-planning, plan management and supports coordination.

Member ServicesOur members can access a range of services including peer support, individual advocacy assistance, events and activities, equipment hire, great rates on specialist services, high-quality advice, volunteering opportunities and more. You can also help set our course and have an active voice in our organisation, with member views and feedback truly valued.

Allied Health Services Our dedicated professionals include physiotherapists and occupational therapists, who can assist with:

› Access to expertise and funding schemes › Mobility, seating and equipment solutions and prescriptions › Specialist personal advice and assessments, including

driving assessments › Workplace assessments, home modifications

and pressure mapping › Continence and wound assessment and management › Specialised physiotherapy.

Personal Support and Home Care Services Our team provides reliable services seven days a week* throughout Queensland, including:

› Personal care at home and work › Specialist complex personal care › Domestic assistance around the home › Lifestyle support to attend appointments, activities,

holidays and events › Transition support from hospital to home.

*Seven-day service available in most locations. Contact us for more information.

Employment, study and workplace assistance Our Back2Work program supports patients in the Princess Alexandra Hospital’s Spinal Injuries Unit to return to work or study, while our Allied Health team also provides detailed workplace assessments and equipment solutions. Plus, we deliver disability awareness workshops to educate staff on inclusiveness, conducted by our Training Solutions facilitators. Contact us today on 1300 774 625 or enquiries@spinal.com.au to find out how we can support you.

All our offices will be closed during the Christmas and New Year period on 24, 25, 26 and 31 December and 1 January.

Our Supports Coordination and Plan Management services will be taking a break from 24 December until 2 January, however our Personal Support services will continue through the festive season.

We wish you and your loved ones a happy and healthy holiday season and can’t wait for another exciting year for The Advocate in 2019!

DECEMBER 2 December Accessibility Day

3 December International Day of People with Disability

4 December WA Accessible Beaches Community Meeting

10 December Human Rights Day

JANUARY 20191 January NDIS roll-out begins for Sunshine Coast, Noosa and Gympie regions

26 January Australia Day

FEBRUARY 2019Cairns Healthy Living Centre update - Date TBC

Western Australia Accessible Travel Event - Date TBC

SUMMER 2018 THE ADVOCATE 39

18100.01