Accord 2018 autumn

Autumn 2018

NIC BEVERIDGE: GC2018 SILVER MEDALLIST KURT BROWN: ON TOP OF THE WORLD

M1 One Chair. Endless Options.

Designed with adaptable seating and positioning needs in mind, the M1 offers all the flexibility without the compromise.

AVAILABLE APRIL 16!

1" Tubular backrest

THE F5 CORPUS ® VS

Two points of contact for added stability

STAND WITHOUT COMPROMISE

WWW.PERMOBILUS.COM

permobil.com.au

10

06

04 18

CONTENTS 02 03 04 08 10

From the CEO From the President News Fundraising Para-triathlete lifted by home town crowd

14 K urt Brown: On top of the world 18 Para Dance Sport 20 Daily Living 22 NDIS Q&A 24 Policy and Advocacy

28 32 34 35 36

Regional Round Up Technology Information & resources Review: Waterskiing Events

Cover image: Nic Beveridge

Patron: His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), Governor-General of the Commonwealth of Australia accord is a publication of Spinal Cord Injuries Australia ACN 001 263 734 Incorporated in NSW Head office: 1 Jennifer Street, Little Bay NSW 2036

Sub Editors Rosemary Gillespie Glynis Skepper

Phone: 1800 819 775 Fax: 02 9661 9598 Email: info@scia.org.au Website: www.scia.org.au

Designer Shauna Milani Advertising accordadvertising@scia.org.au

Printer: Blue Star Group; ISSN 1448-4145. The opinions expressed in accord are not necessarily those of Spinal Cord Injuries Australia (SCIA) or of the Editor. They are published to create a forum for debate on issues related to people with disabilities. Original material in accord can be reproduced only with permission from the Editor. Information in accord is furnished solely as a guide to the existence and availability of goods or services. accord has neither the staff nor the facilities for testing and evaluating any of the services or items and therefore can assume no responsibility for the effectiveness, safety or quality of any such items or service. accord is funded by the New South Wales Department of Family and Community Services, Ageing, Disability and Home Care.

FROM THE CEO

A clear path forward in a CHANGING ENVIRONMENT updating our constitution, revising our On 10 August 2011, the Federal branding and membership structure, and Government released the Productivity boosting our skills in finance, marketing Commission Report into “Disability Care and human resources. and Support”. The release of this report, and subsequent discussions between state and 2. C reating a national footprint. This has federal governments, led to the creation of occurred via the rollout of NeuroMoves the National Disability Insurance Scheme sites across the country.

(NDIS), with launch sites for the scheme 3. R eplacing existing government funding. commencing on 1 July 2013.

New funding sources have been identified Since that time, our organisation has been for almost all services that previously preparing for the introduction of the NDIS. relied on government funding.

It has taken around four years for us to think through and respond to a lot of really 4. Finding new sources of income. This has included the creation of new NDISimportant questions, such as: related services, the expansion of existing • W hat would our members and others exercise, employment and advocacy need from us in this new world? services, tapping into new funding sources such as the aged care system, • W hat kind of organisation would we be and creating new streams of fundraising in the future? revenue via corporate partnerships and • W ould we continue to be a specialist the Big Day Off. organisation?

5. Maintaining SCIA’s profile and • W hat changes would we need to make to influence. This has mainly occurred meet the needs of this new environment? through our involvement in a range of After a lot of thought and discussion, we government committees and working agreed that even though the world was parties, industry groups, and initiatives changing around us, we needed to be true such as Project Edge. to our origins, and remain a trusted advisor Late last year I was able to inform our Board for people living with a spinal cord injury and staff that all of the steps required to and other physical disabilities. ensure that SCIA was ready for the full rollout However, in a future disability sector based of the NDIS had been largely completed. on market principles, without ongoing That’s not to say that no further work is government funding to support our required, as the world never stands still, but services, the organisation needed to adapt the end of 2017 marked a milestone whereby in a number of ways. That’s why for the last SCIA could confidently say that it is now four years we’ve been implementing many well prepared for whatever challenges and changes to make sure we could continue opportunities will come about in the future. to thrive as a viable, influential, memberI’m glad we started this process some time based organisation. ago because it allowed us to transform the After consulting with staff, customers, organisation in a steady and controlled way. donors, government, corporate supporters This is much more sustainable than having to and others, our Board and management change everything quickly, which I now see a team decided that the changes we needed number of other organisations trying to do. to make to be ready for the introduction of SCIA has changed quite a lot, but I can say the NDIS were in five main areas: with great confidence that we will continue to be there for our members and other 1. P reparing the organisation. This stakeholders for many years to come. ▪ included creating a customer experience team, investing in new technology, 2

accord magazine

FROM THE PRESIDENT

Sport today REALLY IS FOR EVERYONE This year will mark 70 years since an English doctor named Ludwig Guttmann founded the International Wheelchair Games. His aim was to help rehabilitate wounded soldiers who had returned from World War II, but the event would go on to become the modern day Paralympic Games.

Perhaps of more notable importance is Ludwig’s notion that the enjoyment and fulfilment derived from sport is not limited to the able-bodied. Oh, and Prince Harry is not the first person to think that sport would be great rehabilitation for veterans.

In 2018 the opportunity for those with a disability to become involved in sport has never been more available, and it follows that there is now an even greater number of sporting programs and Paralympic movements that offer disabled athletes high-performance pathways to take if they choose.

In Australia alone, this year Sydney will host the Invictus Games in October and the Commonwealth Games on the Gold Coast in April, which will set a new benchmark in not only the number of events for those with a disability but the number of disabled athletes participating.

Some may say the fame and glory achieved through professional sport doesn’t necessarily follow a disabled athlete as readily as it would for one who is able-bodied. However, perhaps even that stereotype is on the cusp of change.

Paralympian, wheelchair basketball player and wheelchair tennis player. He declares being disabled is not a death sentence and maintains he wouldn’t want to be any other way.

Dylan is certainly making his way along the road to fame and glory with appearances in advertisements and on billboards. I’m positive I’ve even seen him on the side of a bus – surely the ultimate benchmark in notoriety!

Sport is for everyone. Some of the most memorable moments in Olympic history – Eric the Eel and Eddie the Eagle (or vice versa – I get them confused), the Jamaican bobsled team and Stephen Bradbury to name a few – have all shown us that anything is possible.

Yes, in 2018, regardless of your ability, sport is for everyone.

Baron Pierre de Coubertin, the founder of the modern day Olympics, didn’t leave much room for doubt when he spelt out his movement’s ideals: “The important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well.”

Umm…my sentiments exactly. Now, where did I put that number for Empower Golf? ▪

I recently watched a documentary featuring Micky Yule, a Scottish born Olympian power lifter and gold medal winner at the Invictus Games. What I remember most was his comment, “People don’t look at me and see Olympian, they see disabled.” Sad observation, but that’s the way he feels.

Then, at the other end of the spectrum, athletes like Dylan Alcott shine. Dylan is an Australian gold medal winning www.scia.org.au 3

NEWS

Breakthrough study proves all is not lost in thoracic spinal cord injuries Researchers from Neuroscience Research Australia (NeuRA), The University of Sydney and HammondCare have found surviving sensory nerve connections in nearly 50% of people living with complete thoracic spinal cord injury, giving watchful hope for people who have sustained T1 – T12 complete paraplegia.

The breakthrough study was part of a decade-long collaboration between Associate Professor Paul Wrigley, Professor Phillip Siddall and Dr Sylvia Gustin using cutting edge functional Magnetic Resonance Imaging (fMRI) technology to record neural responses in 23 people with complete paraplegia.

Dr Gustin analysed the fMRI images of the moment a patient’s brain registered touch and said that despite a complete thoracic injury, neural pathways had been preserved.

“What is fascinating is though the patients did not ‘feel’ the big toe stimulation, we were able to detect a significant signal,” says Dr Gustin.

Associate Professor Wrigley says that it is exciting to find a way to clearly show the sensory pathways are intact.

The research, published in the journal Human Brain Mapping, opens up new avenues for future research and treatment opportunities aimed at improving sensation and movement.

NeuroMoves Canberra officially opens

Left: (L-R) NeuroMoves staff member Claudia James, Minister for Disability, Children and Youth Rachel Stephen-Smith, SCIA CEO Peter Perry, SCIA President Christine Tink (in front), Helen Roff, and John James CEO Joe Roff. Right: NeuroMoves staff members Alex Vidler and Claudia James with NeuroMoves client Jordan Kramp.

A group of Canberra locals has been the driving force behind the establishment of NeuroMoves Canberra by SCIA. Forced to travel interstate for extended periods in order to access specialised treatment, the group worked with SCIA to secure funding, including grants from the ACT Government and the John James Foundation.

After much collaboration the site was officially opened on 28 February at the Flynn Community Hub by the Minister for Disability, Children and Youth, Rachel Stephen-Smith.

SCIA CEO, Peter Perry, said, “It’s pleasing to see all the hard work 4

accord magazine

and collaboration come to fruition. I couldn’t be happier for the people of the Australian Capital Territory.”

It incorporates whole body exercises, undertaken out of the wheelchair.

remove the barriers that arise for people with a neurological condition when accessing quality exercise services.

NeuroMoves’ intensive therapy is different from traditional therapy because it aims to stimulate the nervous system above and below the injury to optimise functional recovery.

NeuroMoves is a registered provider under the NDIS.

“Each program is tailored to an individual’s NeuroMoves first opened in Brisbane ten specific goals, such as more independent years ago and now has sites in Sydney, daily living, reducing the need for Lismore, Melbourne, Adelaide and Perth. assistance or care hours, improving the ability to return to employment or study, Leah Sholer, NeuroMoves’ Operations or engaging actively in family life.”

Manager says, “NeuroMoves helps

Members of SCIA can book a free consultation with one of our qualified exercise physiologists. If you’d like to know more about NeuroMoves, email info@scia.org.au or phone 1800 819 775.

NEWS

Para-athletes strengthen success at CG2018 With this year’s Gold Coast Commonwealth Games (CG2018) setting a new record for inclusion of the largest, integrated para-sport program in Commonwealth Games history, it was only fitting that the debut of the paratriathlon event saw home town favourites Nic Beveridge and Bill Chaffey coming in second and third consecutively, claiming silver and bronze medals.

More than 300 para-athletes competed in 38 medal events across 7 sports, an increase of 73% of medal events from four years ago, and 45% more para athletes able to compete. Lauded as a huge success for inclusivity of people with a disability by both athletes and spectators alike, para-olympic veteran and one of our most successful paraathletes, Kurt Fearnley implored the same model of inclusion be used for other aspects of everyday life.

One of the first para-sport gold medals at CG2018 went to Tim Disken, who has Cerebral Palsy, claiming gold in the Mens S9 100m freestyle final, and then backing it up with a second gold the following night in the Mens SB8 100m breaststroke final.

A special mention to wheelchair athlete Madison de Rozario, who won a gold medal in the women’s T54 1500m track event, with a significant lead ahead of team mate Ashley Ballard. Madison sustained paraplegia after contracting a rare auto-immune disease when she was four. She credits her athletic training program and mentors, as changing her everyday life, not the success she has achieved through competition.

“I love the training and not just the racing, you know? And I love the lifestyle that I get to lead by doing it. I love that I’m surrounded by such strong women every day of my life, because of the goals that I’ve set. And that’s so much more important than the actual goal.”

“Let’s have that same conversation about what is happening here at home about our education facilities, about our transport, about employment,” he said.

According to Kurt, the level of support for para-athletes was ‘staggering’. The crowd and TV coverage reflected that sentiment with athletes competing in packed stadiums and enjoying comprehensive media coverage in prime time – which can be lacking when para-sports are relegated to separate competitions.

This year’s Commonwealth Games team has been one of the most successful for Australia since the Games began comfortably leading the medal tally from beginning to end, and undoubtedly lifted by the huge success of our para-athletes.

You can read more about Para-triathlete Nic Beveridge’s story on page 14.

5.1 KM/H SAFE SEAT ELEVATION (OPTIONAL)

OPTIONAL FRONT AND REAR LED FENDER LIGHTS

CASE (CASTER ANGLE SENSOR ENCODER) TECHNOLOGY

SRS (SMOOTH RIDE SUSPENSION)

NOW AVAILABLE

The

VISIT QUANTUMREHAB.COM TO LEARN MORE

of a new era.

After mounting pressure from disability advocacy groups, the NSW Government announced in early April that it will reverse planned funding cuts to dozens of organisations that advocate for people with a disability. Due to be cut in July 2018, the Government has now extended funding until 2020.

Spinal Cord Injuries Australia (SCIA), which is part of the NSW Disability Advocacy Alliance, took part in the Stand By Me social media campaign to help draw attention to the issue, and is pleased that the government has responded positively.

“It’s important that everyone has a right to access advocacy and SCIA will continue to work towards a more inclusive society,” said SCIA CEO, Peter Perry.

Without any guarantees of funding beyond 2020, continued support for disability advocacy funding is needed.

Visit http://standbyme.org.au and sign the petition.

All abilities yoga Starting in May, Fighting Chance will be conducting yoga classes for people of all abilities on Tuesday afternoons from 3.30pm–4.30pm.

Fighting Chance is located in Frenchs Forest, New South Wales, and the yoga classes are part of their LifeX program, designed to empower people to reconnect and reclaim their social life and confidence.

Led by a qualified yoga instructor, the second term will have a particular focus on breathing. The aim of LifeX is to keep the classes fun, skill-based and to improve overall health and wellbeing. Classes are $20 per session and support can be provided if you need a helping hand.

To find out more contact Jo Berry at jo@fightingchance.org.au or phone (02) 9905 0415. You can also visit www.fightingchance.org.au/lifex/ to view the complete LifeX timetable. www.scia.org.au 5

ROLLOUT OF THE NDIS Queensland

NEWS

Seven summits. Four months. One dream.

FAST FACTS

case for everyone, and many others may In December 2014, Steve Plain was  Existing commonwealth state based  The NDIS is expected to be operating stateSteve Plain on top of and Mount Lhotse swimming at Cottesloe Beach in Western not be as lucky. supports will continue until you are covered wide in Queensland by July 2019.

Australia when he was dumped by a is beingItintroduced  Roll-out stages by was from in this realisation that Project by the NDIS. wave and went head first into the  You don’t need to be registered with the localsand. government area from 1 July 2016.

7in4 was born. Climbing seven summits  If you currently around receive specialist the worlddisability in just four months, existing disability support system to take Steve suffered multiple fractures to the services and supports you will be contacted Steve’s aim is to raise awareness of SCI part in the NDIS. C2, C3 and C7 vertebrae and was told before your area transition. by sharing his story; helping to fund the to expect he would never walk again. life-changing work of ProjectEdge and Lying in hospital, he found his YEAR uncertain FIRST OF FULL ROLLOUT SpinalCure Australia in the process. prognosis frustrating and frightening.

From 1 January 2016 the National Disability Insurance (NDIS) began early transition in the local Now in his fourth month, SteveScheme has However, through sheer hard work government areas (LGAs) of: conquered six peaks already, with only and determination, Steve managed to  Townsville (0-17 years) one to go! You can help Steve by making overcome his significant spinal cord  Charter Towers (0-17 years) a donation, as well as follow his journey injury (SCI) and get back on his feet.  Palm Island at https://project7in4.com/ But he is acutely aware that this isn’t the From 1 July 2016 the NDIS will become available to remaining children and young people (0-17 years) in Townsville and Charters Towers LGAs and all eligible on Palm Island.

Queensland continues NDIS rollout across the state From will 1 October From 1 July the NDIS rollout be 2016 the NDIS will progressing across the coastal regions of become available in Queensland, including Robina, Brisbane the LGAs: City, Beenleigh and Maryborough.  Townsville  Charters People with a disability who are Towers the currently receiving support through Boulia Queensland Government will continue  Burdekin to be funded under the NDIS. 

Burke

Applications for participation can be  Carpentaria accessed up to six months prior to the Cloncurry scheme’s availability in your region.  Doomadgee Flinders SCIA is a registered NDIS provider and  Hinchinbrook offers pre-planning support for those  McKinlay transitioning into the scheme. We also  Mornington offer advice and support for those who  Mount Isa have been approved but who are seeking  Richmond a review of their plans.

Fromwith 1 November If you’d like to get in contact a 2016 the NDIS will member of our team, email become available in info@scia.org.au or call 1800 819 775. the LGAs:  Isaac

Image: www.communities.qld.gov.au /swe/ndis-rollout-in-queensland





Mackay

ROLLOUT OF THE NDIS: QUEENSLAND Ver 1.02 16062016

Whitsunday © MS Queensland 2016

1

Read more news and share your own stories with us here:

FACEBOOK /spinalcordinjuriesaustralia

Connect with SCIA

TWITTER @sciaust INSTAGRAM spinalcordinjuriesaustralia YOUTUBE /spinalcordinjuriesau LINKED IN /company/spinal-cord-injuries-australia

6

accord magazine

Discover our new catheter Designed to make every detail easier

Flexible Flexible tip for easy and gentle guidance to your bladder.

Private Practical re-closable packaging for discrete and hygienic disposal.

Hygienic The soft-squeeze grip makes it easy to guide the tip into the urethra safely.

The dry sleeve means the catheter can be inserted without having to touch the tube itself.

Introducing SpeediCathÂŽ Flex 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

1800 653 317

www.coloplast.com.au/Flex

The Coloplast logo is a registered trademark of Coloplast A/S. Š 2017-08 CON605. All rights reserved Coloplast Pty Ltd, PO Box 240, Mount Waverley, VIC 3149 Australia.

Free sample

FUNDRAISING

Free appointments Meet one of our fabulous fundraisers with continence nurse A huge thank you to those taking part in the HBF Run for Reason in Perth in May!

Natalia Wardle is taking part in the HBF Run for a Reason coming up in May. Nat is hoping to raise $1,000 for SCIA – and she is already well on her way!

Nat has Cauda Equina Syndrome (CES), a rare disorder that requires immediate surgery. Nat has CES in her L5 and S1 spinal cord and it was all started by something that could happen to anyone – a slipped disc. The onset was gradual, first with sciatica and then involving continence issues.

In partnership with Access to HealthCare, SCIA is offering free 1:1 continence product update appointments with a Coloplast nurse. Appointments are open to all people with continence issues, not just those with a spinal cord injury.

These private appointments are not designed to provide you with a Comprehensive Continence Assessment.

Rather, they are aimed at giving you greater choice by teaching you more about the latest bowel and bladder products, solutions and management.

You will: • L earn about the latest Coloplast bladder and bowel products to better suit your needs • L earn how these new bladder and bowel products can decrease your risk of urinary leakage or urinary tract infections There’s absolutely no obligation to use Coloplast products and you will not be pressured to do so.

These appointments provide the additional benefit of helping you take control of your own NDIS planning.

You’ll be given a detailed report that will assist you in directing and obtaining enough NDIS funding for the right bladder and bowel products to meet your needs. However, it’s important to note that these sessions will not provide you with a Comprehensive Continence Assessment.

For more information call SCIA on 1800 819 775 or email info@scia.org.au 8

accord magazine

In August 2015, her condition rapidly deteriorated overnight and she woke up to find she had lost bladder control, unable to stand upright because of the pain. Unfortunately for Nat, her condition wasn’t treated as an emergency.

However, after waiting several days, she finally had surgery, giving her relief by taking pressure off the nerves in her cauda equina.

After sustaining her spinal cord injury, Nat couldn’t even walk down the street.

Now, she’s aiming to complete the 12 kilometre walk in May! Although she still suffers chronic nerve pain, Nat says, “I appreciate that I’m one of the lucky ones and have regained a semi-normal walking gait.”

Cassie Strebel, her brother Ben Sainsbury and a wider team of friends and family (pictured above right) are also taking part in HBF Run for a Reason for SCIA.

In September 2017, at the age of just 16, Ben Sainsbury was involved in a serious motocross accident whilst training for the final state round for a sport he has so much passion and love for. Ben suffered a severe spinal injury shattering his T5 & T6 causing spinal cord damage, broken ribs and a torn spleen. Ben underwent surgery to insert 2 rods from his T2 to T10 and screws stabilising his vertebrae.

Ben is determined not to let his injury get in the way and he is already preparing for a busy year at school and TAFE, as well as the race!

We wish them both the very best of luck in Run for a Reason!

If you’ve been inspired by these stories and would like to raise money for SCIA please contact info@scia.org.au or call 1800 819 775.

New equipment on its way for kids’ program A big thank you to The Jack Brockhoff Foundation for their generous grant of $9,000 towards paediatric equipment for SCIA’s NeuroMoves exercise therapy program for children in Melbourne.

This equipment is vital to assist children with a spinal cord injury or neurological disorder to gain better motor function and control.

We’re very excited to have this equipment in the gym. It will not only accelerate the rate at which our youngest participants can improve their daily functioning, balance and walking, it will also increase their weight-bearing abilities for standing, and their overall endurance levels.

Do something amazing this year and join team SCIA Whether it be the SMH Half Marathon, City2Surf or Tough Mudder – run, swim or cycle your way towards helping us overcome barriers to independence for people with spinal cord injuries.

Visit scia.org.au/team-scia/ for some inspiration and get involved this year. scia.org.au | 1800 819 775 | teamscia@scia.org.au

COVER

by Glynis Skepper

T

he concept of a major athletics event which would bring together competitors from all corners of the Commonwealth was first raised by John Astley Cooper way back in 1891. Some 127 years later, there’s no doubt Cooper would have been delighted to see his vision of “increasing goodwill and good understanding between countries” so successfully translated into the 12 days of real edge-of-the-seat sporting competition that was the 2018 Commonwealth Games held on Queensland’s Gold Coast in April.

Cooper’s idea of promoting inclusivity was particularly evident at this year’s hugely entertaining GC2018, as the Games were more commonly known. That’s because they included the largest integrated para-sport program in their long and illustrious history. Unlike the Paralympics, held exclusively for athletes with a disability, the Commonwealth Games concept integrates para-sports into one tremendously exciting, fully inclusive schedule of elite-level competition.

And GC2018 really went all out to be inclusive, not only holding equal numbers of men’s and women’s events overall, but hosting some 300 paraathletes and 38 medal events across seven sports.

That’s a massive 45 per cent more athletes and 73 per cent more medal events than at the Glasgow Commonwealth Games held in 2014.

Australia’s team of world-class sporting talent comprised 88 able-bodied and 23 para-athletes; 13 stronger than the team sent to Glasgow.

10

accord magazine

The para-sport program was carefully put together after close collaboration between the Commonwealth Games Federation, the Paralympic Committee, GC2018, and other international sporting federations.

The competition this year was particularly thrilling.

Both the swimming and athletics programs were twice the size of previous Games and, as if that wasn’t enough, the inclusion of the first ever wheelchair marathon (T54) was a white-knuckle ride for competitors and spectators alike. The streets of the Gold Coast witnessed some truly electric action as a field of top athletes sped through a physically demanding and technically challenging course.

Also making its debut performance was the endurance-testing para-triathlon. A triathlon is unique in that able-bodied and disabled athletes compete at the same time, both at national and international levels. Triathlons are becoming increasingly popular all around the world and

COVER

their inclusion at GC2018 was a tremendous boost for the sport.

Representing Australia as part of the six-strong paratriathlon team was 31-year old Gold Coast local, Nic Beveridge. His performance was truly impressive, seeing him placed second – a fantastic result.

Already a veteran international competitor prior to GC2018, Nic came ninth in the premier of the men’s para-triathlon PT1 at the 2016 Rio Paralympics. In February, he came second in the Para-Triathlon World Cup in Devonport and in his most recent overseas competition, the 2017 ITU World Championships in Rotterdam, he placed fourth in the Men’s PTWC, his best ever international performance prior to his silver medal win at CG2018.

Now ranked as one of the world’s top paratriathletes, he’s light years away from where he thought his future lay back in 2004. Then just 17, Nic’s life changed dramatically one evening when, without warning, he found it hard to breathe and

his body began spasming wildly, severely frightening both himself and his parents.

An emergency dash to the hospital saw Nic’s condition worsen to the point that he became unconscious. When he eventually woke, it was to find he no longer had the use of his legs. Transverse myelitis – inflammation of the spinal cord due to an immune system dysfunction – was to blame.

Once a keen water polo player, it was at Sporting Wheelies’ suggestion that Nic got back in the pool as part of his rehab, but he struggled to adapt as a disabled swimmer. Wheelchair basketball proved equally unappealing. “I only did swimming to try and regain fitness, really. And, whilst I recognised the skill required for basketball in a wheelchair, I wasn’t passionate about it,” he explains. Nic’s eventual conclusion was that para-sport simply wasn’t for him.

But that notion changed one day in 2012.

Recuperating in hospital following a complex operation, Nic idled away the long hours watching www.scia.org.au

11

COVER ◀ continued from page 11

The GC2018 Australian para-triathlon team including Bill Chaffey third from right, and Nic, second from right.

the Paralympics on TV. Inspired by the para-athletes’ stories, he was busy Googling sporting options when he came across a story featuring para-triathlon champion, Bill Chaffey. It was a real turning point for Nic who suddenly knew with blinding clarity that para-triathlon was the sport for him.

To Nic’s surprise, Bill immediately answered his initial email asking for advice. Before long, the two athletes became best mates, eventually representing Australia together in Rio. It was a very special time, recalls Nic. “I’m a sentimental type at heart, so to have made the 2016 Paralympic team with Bill, and then the Commonwealth Games, was fantastic.

From where I started with no expectations – hoping to just get into the sport – to now be regularly competing side by side with Bill is pretty incredible.”

Today, as Nic reflects on his outstanding performance at GC2018, his achievements seem all the more remarkable considering he took up para-triathlons just six years ago. He admits it was an added bonus to be competing in front of a home crowd. “To think that it was a home Games, in my state and I was born right there on the Gold Coast made it really special.

It was also the first time that many of my friends and family were there in person to watch me compete, so it was very emotional. I had a huge cheer squad!”

GC2018 went to great lengths to demonstrate inclusivity for the Games, considering all aspects of accessibility in its planning and delivery. Working with an accredited access consultant who was himself a Commonwealth Games para-athlete gold medallist, the Gold Coast 2018 Commonwealth Games Corporation (GOLDOC) focused on providing optimum enjoyment for people with a disability, both on and off the field.

All GC2018 competition venues had accessible services and facilities, including two types of accessible seating, unisex accessible toilets, assistive technology, and guide and assistance dog relief areas.

There was also an accessible meeting point where members of the Spectator Services team welcomed 12

accord magazine

and gave assistance to anyone who required extra help or information.

Nic says he was impressed by GOLDOC’s efforts.

“From an athlete’s point of view, I think the way that I didn’t notice any particular concessions being made for being disabled was a really positive thing, if that makes sense. The way they catered for everyone’s differing needs was all so seamless and that’s a real compliment to the organisers. Disabled and ablebodied athletes were all in the same village, we were all on the same team, and we ran to the same schedule.

No one was treated any differently to anyone else.”

Being chosen to be one of only 19 Games’ ambassadors was completely unexpected, according to Nic. “It was a real honour and I was very flattered to be asked. There were no official duties as such; it was more about promoting GC2018 by what you did. I just tried to embody the sort of values that the Games were all about. I felt very lucky and took the ambassador role seriously. I like to think that all we did inside and outside of training was noticed in a positive way.”

Nic is steadfastly self-effacing when it comes to the impression being a Games ambassador may have had on others. “I believe you don’t need to have an official role to inspire others because every athlete has the opportunity to resonate with someone. You just don’t know who will inspire you or what may make you want to change – that’s very individual. But it was also what made it so exciting; that mystery of knowing you may have influenced someone to at least try and do the best they could with their life.”

With GC2018 now behind him, Nic’s keen to push on towards selection for the 2018 Paralympics. “The Tokyo para-triathlon has just been announced and if my PTWC class is added, I’ll be aiming for a place on the team. Otherwise, I’ll see. Triathlons are very demanding. Not just physically but in terms of lifestyle and time commitment. It’s definitely draining, but it’s why you’re still on the quest to better yourself. As to how long I’ll continue, I can’t put a date on it. They say ‘you’ll know when you know’ – and I don’t know yet!”■

CALL US:1800 672 437

Contact us today for an obligation free quote and demo!

Freedom Motors Australia introduces the all new latest model KIA 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.

FREECALL:1800 672 437 www.freedommotorsaustralia.com.au sales@freedommotorsaustralia.com.au

IN PROFILE

by Glynis Skepper

K

urt Brown can remember his exact thoughts in the moments after the motocross accident that was to render him an incomplete paraplegic. As he lay sprawled on the ground, the wheels of his bike spinning slowly to a stop close by, he immediately made an important decision.

"I knew it was bad. I vividly remember lying there promising myself, 'I will remain as active as I can be'.

I was only 19; there was so much life I still wanted to live and I wanted to experience as much of it as I possibly could."

That was seven and a half years ago. Today, Kurt is a work management planner at the Appin Mine in Wollongong, where he began a mechanical fitter apprenticeship when he was just 16. He loves what he does; happy still to be with the same company he credits with giving him tremendous support during and since his recovery.

Spinal Cord Injuries Australia (SCIA) was also instrumental in helping Kurt with career guidance and getting him into the driving seat of a converted car, giving him back his much-valued independence. In

14

accord magazine

recognition of their support, Kurt, together with dad David, organised a number of Easy Rider South Coast Cruises for motorbikes and muscle cars, raising money for Spinal Cord Injury Awareness Week.

At the time of his injury Kurt was super active, very fit and keen to compete in body building. Today, he’s just as dedicated to keeping fit, but it’s the motivation behind his fitness that’s changed. "My absolute worst nightmare is that I have to sit on the lounge and watch TV because of discomfort or fatigue. I weight train five days a week but it’s not about sculpting an aesthetically appealing body any more. It’s because I want to prolong my lifestyle and keep up with the kids my partner and I fully intend to have. That’s what totally drives me now."

A self-described “hobbyist snow-boarder” before his accident, it was while Kurt was still in hospital that his three best mates announced they’d booked a ski trip to New Zealand. "They’d found this YouTube video about 'mono' or 'sit-skiing' and reckoned I’d learn pretty quickly," he says. "My main concern was that I didn’t act like some kind of handbrake on anyone else’s fun. I didn’t want these guys to feel like they needed to baby sit me for two weeks."

As it turned out, any anxiety Kurt had was short-lived.

"We’d hired the sit-ski and tried the least intimidating slope to begin with. But no speed, constantly tipping over and the struggle to get back up were really frustrating. In the end I just said, 'Bugger this, get me to the top of the steepest hill and by the time I get down I’ll know how to do it'. And I was right! Pun fully intended, it all just snowballed from there."

And he’s not kidding. Kurt eventually became so skilled at what’s known as 'para alpine skiing' that it wasn’t long before he was earmarked as a potential international competitor. He gave it his all, declaring his eventual selection for the Australian Development Team – a stepping stone before selection for the Winter Paralympic squad – to be a real highlight. "It was an unbelievable experience. I had so many opportunities along the way that were just totally intense. Travel to Japan and Colorado for 5-week development training camps, jumping in the van and heading down to train at Perisher every other weekend during our winter here – it was one big amazing ride."

However, in a move that surprised many, Kurt pulled out of the team prior to Olympic selection. "It was tough but the right decision," he explains. "My life goals were what made me consciously pull the pin. I’d stretched everything as far as I could in terms of being able to keep my job whilst using all the leave I had – and even some I didn’t – to spend sometimes months at a time overseas.

My partner and my employer were both incredibly supportive, but in the end it wasn’t sustainable."

These days Kurt still skis as much as possible, enjoying nothing more than regular weekends at the snow with his partner and mates. "I’m literally on top of the world when I see that view from the top of those mountains.

My injury is simply irrelevant and it’s impossible not to feel happy." www.scia.org.au

15

Kurt and partner Megan.

You might expect that recent medical advancements aimed at getting people with a spinal cord injury back on their feet would interest Kurt, but you’d be wrong. And he’s adamant about why. "I consciously choose not to read or listen to anything about that stuff. I’m living right now and I make the most of every moment that I have – right now. If a 'cure' comes around, I’ll be told about it, but I proactively try and block out anything that turns me from focusing on what’s now to thinking about 'what if?'"

Kurt’s partner supports his stand, including his opposition to undergoing a possible future operation. ‘She wants me to stay just the way I am; she’s fearful of what any procedure might result in.

And to be honest, there’s a real element of truth in that because I still have a lot to lose. I value what I’ve got and my quality of life too much.’

Relentlessly upbeat today, Kurt says that there have been times that he felt low. "Undoubtedly," he admits. "I can’t say I ever felt depressed or really struggled with what happened, but it was frustrating that everyday tasks could be so hard.

But it was only momentary; just a short time of difficulty – and life is full of those moments for everybody, irrespective of their physical abilities."

So, what advice does Kurt have for those newly in the position he found himself in back in 2010?

16

accord magazine

"Plenty!" is his immediate response. "There’s pretty much nothing that you can’t still do. OK, it mightn’t look as pretty or as streamlined as the way you used to do it, but who cares? I mean, truly. Who cares as long as you’re doing it?"

Well known for never being afraid to bite off more than he can chew, Kurt takes care to acknowledge that his mindset is not automatically the same for everyone. "When you’re adjusting to your injury initially, you sweat and dwell on things that later on down the track will be of absolutely no concern. I know, because I did that myself.

In hospital, I once spent almost an entire day wondering how I’d ever be able to wheel across grass. Grass! I look back now and it seems ridiculous, but at the time it was very real and very frightening. So, just know that it really does get better. Everything passes."

Kurt has one last piece of advice. "Keep busy and so focused on what you’re currently doing that you don’t even have time to remember you’re in a wheelchair," he says before stopping and correcting himself. "No, that’s a term I hate. I prefer to say I 'use' a wheelchair, because I believe it’s too confining to say I’m 'in' one. There’s so much you can do without it – swim, ride a motorbike, jet-ski, para-glide, whatever you want to experience. A wheelchair really is a tool just like any other. What it most definitely isn’t, is who you are." ■

FEATURE

Passion and beauty: Para dance sport When competitive dancer Daria Alforova was approached by her dancing coach to help develop a dance sport that could include people with various disabilities she was excited. She then not only developed the first para dance sport (formerly IPC Wheelchair Dance Sport) program in Ukraine, but went on to train multiple world champions. Now she’s trying to bring the elegant and graceful sport to Australia.

by Susan Wood

S

eated outside a café in Rhodes, New South Wales, Daria’s passion about para dance sport is obvious. It only multiplies when she talks about how inclusive para dance sport can be, bringing people with disabilities and able-bodied people together to compete as one.

"In 2000, my dance coach in Ukraine approached me with the concept of rehabilitation through movement and music, as she had a child of her own with a disability", she says. "And I’m proud that I was there from the very beginning of its conception in Ukraine."

Wheelchair dance was first pioneered in Sweden

by Els-Britt Larsson in 1968. At the time Daria was developing para dance sport in Ukraine, countries like Sweden, Germany and the Netherlands were already including para dance sport as not only a recreational activity, but a competitive sport as well.

The introduction of para dance sport in Ukraine also meant that Daria and her new dance partner, who is a wheelchair user, became the first in a long line of mixed-ability combination couples who represented Ukraine on an international level.

Para dance sport includes ballroom, Latin American and show dancing styles. Daria teaches each style while adapting to suit the individual’s ability level and type of wheelchair they use.

Dancers are able to dance solo or duet with another wheelchair user, or one wheelchair user and one standing.

18

accord magazine

the dancer’s unique and personal style, which I believe is an awesome reward."

Daria believes that the success of para dance sport can be attributed to a strong tradition of dance through debutante balls and able-bodied competitive dancing, despite limited access to public transport in Eastern Europe for people with a physical disability.

Out of sheer determination, many participants in the sport would risk their own safety by traversing over flights of stairs or seeking help from strangers to use Ukraine’s inaccessible transport system just to attend each dance session. "It was pure heroism," says Daria.

With restrictive access to get around, an unstable economy and limited opportunities for people with disabilities to gain education or employment, para dance sport was a way for people with various disabilities to "prove" themselves in the world.

"We only had a few participants at first, and then we became bigger and bigger, drawing attention from mainstream media, and then finally received support from Ukrainian Paralympic Committee which provided a bus for competitors to get to and from training, as well as paying for competition expenses," says Daria.

Daria acknowledges that there are both challenges and rewards to not just being a para dance sport coach, but also as a dancer.

A typical training session would begin with stretching and warm up exercises, followed by dancing techniques. "We choose a dance and I explain its character, rhythm, figures and body movements," says Daria. "The benefits for someone participating in para dance sport, even on a recreational level, are positive for body and mind."

"Challenges and rewards are like two sides of a coin," says Daria. 'The challenges force both dancer and coach to be more creative and to find a way to create something that will suit the dancer’s ability level. Eventually, this becomes

Dancers in a wheelchair may find that they maintain physical balance, increase flexibility and range of motion, as well as experience improved respiratory control. The psychological effects of dancing have been overwhelmingly positive.

"It’s a great opportunity to engage in a fun and friendly social event, whilst learning how to express oneself through music and movement."

On bringing the sport to Australia, Daria acknowledges the difficulty in introducing a new sport to a nation where rugby, tennis and basketball are so familiar. However, she knows that there is a large section of people who enjoy the arts, dancing and music and who are looking for an alternative.

Bringing with her a wealth of experience in training multiple European and World Para Dance Sport champions, Daria would like to see an Australian arm to competitive para dance sport get off the ground in the coming years.

"The passion, the creativity, the willpower and persistence – every dancer has a story."

If you are interested in participating in para dance sport, or would like to know more, you can contact Daria directly at daria.alf@outlook.com.

No experience required, just a love of dance. ■

Combi couple Valeriy Bevzyuk and Veronica Pedchnko. www.scia.org.au

19

DAILY LIVING

Get fit, get independent!

Keeping fit and healthy after a spinal cord injury (SCI) is integral to post-injury health and well-being. NeuroMoves physiotherapist Kate Robertson explains the benefits.

L

ong-term wheelchair users are increasingly at risk of shoulder injuries due to excessive loads and the ongoing stresses of transferring and propelling a wheelchair, with incidence as high as 50 per cent. Exercise is crucial and programs such as NeuroMoves can help break down the barriers that still exist for wheelchair users when exercising in the community.

An overall fitness program for someone with SCI should incorporate resistance training, flexibility and endurance, all of which should be sufficient to maintain normal shoulder movement and strength, and prevent any overuse injuries long term. Regular ongoing exercise can decrease the incidence of cardiovascular-related disease in SCI, as well as the incidence of urinary tract and respiratory infections, osteoporosis, and spasticity. Advances in acute care and the management of medical complications such as septicaemia, renal failure, and pneumonia, mean that cardiovascular complications are now the main cause of death in those with SCI. However, physical activity interventions have widely been shown to be effective at slowing the progression of cardiovascular disease.

Shaun Whitbread was NeuroMoves Adelaide’s first client to join the Gym program, after it was added to Adelaide’s suite of exercise services in August 2017. After sustaining a SCI during a motorcycle accident in 2015, he started off with the Activity Based Therapy program to meet his goal of standing independently and walking with a frame. He also used the Neuromoves Gym program to focus on his upper body strength and building strong and healthy shoulders- this was critical to him achieving his functional goals within his Activity Based Therapy program.

It was important to tailor both NeuroMoves programs to Shaun’s current health and fitness level to achieve his goals without injury. Shaun is a great example of how two NeuroMoves programs can complement each other.

Shaun most enjoys NeuroMoves for the atmosphere, to work out with his mates, and knowing there’s always an exercise physiologist around to help him. He attends NeuroMoves three times a week, and has improved his general upper body strength by 30 per cent

20 accord magazine

Shaun Whitbread at the NeuroMoves gym in Adelaide.

and cardiovascular fitness by 25 per cent since starting the program just a short while ago.

Shaun has also started training with the Adelaide Thunder wheelchair basketball team and currently holds the six-minute wheelchair push test record in Adelaide. And as if that wasn’t impressive enough, he’s recently pulled 1.8 km on the rope climber – a huge achievement.

Since starting at NeuroMoves, Shaun’s motivation has grown exponentially. His motto is that the biggest achievements take grit and real determination. "Nothing seems easy at the start, otherwise everyone would be doing it!

Challenging yourself in a gym setting never gets easier, you just get better!" he says.

Shaun shares his aspirations for the future. "I want to be a good role model for my kids, and to show them that just because I have an SCI, nothing really stops me. I’m keen to get back to work as soon as possible, and keep fit and active for the rest of my life. I want to be an inspiration for my kids and show them that your goals are always achievable no matter who tells you that you can’t achieve them!" ■

Are you getting the most from your NDIS plan?

SCIA’s NDIS team is dedicated to helping you achieve the most from your plan. Contact us today to see how we can help you through the NDIS journey.

scia.org.au | 1800 819 775 | info@scia.org.au

NDIS

The National Disability Insurance Scheme (NDIS) rollout is making its way around Australia, with Queensland the next on the list. However, people may not know what to expect when entering the scheme.

We spoke to John Ayoub and Nina Crumpton who both have primary progressive multiple sclerosis. Based in south west New South Wales, they’re already embarking on the second year of their NDIS plans and were happy to talk about their first-hand experiences.

How long did you wait between being accepted for the NDIS and your planning meeting?

John: I waited about three months.

Were you offered a face-to-face meeting or did you handle it over the phone?

John: Not initially. At the time, I had a friend who worked at Macarthur Disability who intervened on my behalf, requesting I have a face-to-face meeting. Eventually, I reached out to SCIA for further support.

What was your experience with your Local Area Coordinator (LAC)?

John: My initial meeting went very well.

My LAC was a nurse and seemed to be very knowledgeable about my disability. As my medical history was quite detailed, she accepted this on face value.

Did the NDIS fund all your necessities or did you request a review?

John: Yes, they did. However, it wasn’t until later on we found they made a mistake by not allocating funds in the right category for my gym rehabilitation and raised it as a review.

This took a while.

What did you use your core funding for and was there anything added that you couldn’t get before the NDIS? John: I use my NDIS plan for home maintenance such as cleaning inside and outside the house, mowing, gardening and some painting.

John Ayoub with his granddaughter.

so I can turn them on and off with ease.

There have been inconsistencies with NDIS approval for fitness and recreation support.

Did you apply for anything in these areas?

John: I needed to put a gym and rehabilitation service as part of my disability, but because it was incorrectly categorised it wasn’t recognised, so I needed to seek a review.

Are you confident about your second year under the NDIS?

John: I wasn’t that confident until I met Mel Gorman, who is the SCIA Peer and Social Supports Coordinator in the Illawarra. She has a strong knowledge of everything related I’ve also used it for building a ramp at my back to the NDIS and has made my life so easy. I door and installing new taps in the bathroom feel like my second year will be much better. ■

22 accord magazine

NDIS

How long did you wait between being accepted for the NDIS and your planning meeting?

Nina: Approximately three weeks. I already had a Community Support Program (CSP) package so the rollover was seamless.

Were you offered a face-to-face meeting or did you handle it over the phone?

Nina: I had insisted on a face-to-face meeting at the LAC's office. I was very well prepared, confident and able to advocate for myself.

What was your experience with your LAC? Nina: My LAC travelled from the Hunter Valley, and to my knowledge had no experience with my disability. I had to insist on a morning meeting so I wouldn’t be fatigued. The meeting took approximately three hours and afterwards I had no further involvement from her, nor was I contacted by another LAC to assist.

For me, this wasn’t an issue because I was confident in working within the system to achieve the best outcome.

Nina with her support worker Sevki.

I receive support with domestic assistance, personal care, meal preparation and cooking.

I’ve even taken a short supported vacation in Newcastle.

Did the NDIS fund all your necessities or did you request a review?

With the NDIS, I’m able to return to university to complete a Bachelor of Community Services.

The NDIS has changed my life.

Nina: I was very fortunate and received a well-funded plan that included everything I requested, so I didn’t need to look into a review.

There have been inconsistencies with NDIS approval for fitness and recreation support.

Did you apply for anything in these areas?

What did you use your core funding for and was there anything added that you couldn’t get before the NDIS?

Nina: I asked for physiotherapy, occupational therapy and a personal trainer. I visit him twice a week for boxing and tai chi. It’s made a huge difference to my motivation and willingness to make lifestyle changes.

Nina: Before I had my NDIS plan, I received only three hours allocated per fortnight through my CSP package, which I used for domestic assistance.

I’ve been able to return to work, and have taxi assistance to arrive on time every day. I’ve also travelled interstate for a work conference with my support worker.

Are you confident about your second year under the NDIS? Nina: Yes! I’m very confident and already researching and planning for my second NDIS plan. And it’s going to blow the lid off the first! ■

For any advice and information on the National Disability Insurance Scheme, your supports or plan management, please contact our community services team on 1800 819 775.

www.scia.org.au 23

POLICY & ADVOCACY Squeaky Wheel

Contributors:

Greg Killeen, Senior Policy and Advocacy Officer (pictured above), has been working with Spinal Cord Injuries Australia (SCIA) since July 1991, initially as an Information Officer before joining the Policy and Advocacy team in 2009. He is also actively involved in a number of community, disability and government advisory committees as an individual or as a representative of SCIA.

Senate inquiry into mobility scooters and power wheelchairs: update Senator John Williams sought a national inquiry into regulating mobility scooters and power wheelchairs when his wife was injured after stepping out in front of a mobility scooter.

On 6 December 2017, the Federal Senate moved that the following matters be referred to the Rural and Regional Affairs and Transport References Committee for inquiry and report by 20 September.

The following Terms of Reference will consider the need for regulation of mobility scooters, also known as motorised wheelchairs, and review a number of matters including: a. t he number of deaths and injuries attributed to accidents involving mobility scooters in Australia since their introduction; b. the causes of these accidents; c. a ny current regulations governing the use of mobility scooters throughout Australia; d. c omparison of Australian regulations with international standards;

Tony Jones (pictured above) has been working with Spinal Cord Injuries Australia (SCIA) for six years as a Policy and Advocacy Officer. Until recently, he also spent three years working as a Researcher and Policy Adviser to NSW Parliamentarian Jan Barham MLC. He has a degree in communications, and enjoys making a positive contribution to improving the quality of life for people with a disability.

e. w hat support structures are in place to ensure the safe operation of mobility scooters; f. t he regulatory role of government and non-government bodies; and g. any related matter SCIA Policy and Advocacy succeeded in having the Committee acknowledge that in some states and territories mobility scooters and motorised wheelchairs are two different vehicles and will therefore treat them separately.

To view our submission visit SCIA Policy and Advocacy at www.scia.org.au Submission issues included: • C lear definition and lineage between a mobility scooter and a power wheelchair • S CIA’s strong opposition to speed limiting such vehicles due to long-term negative user impact, particularly in regional areas

24 accord magazine

with very limited accessible public transport, community services or other vehicles • N ational mobility scooter safety guidelines and public awareness training • T raining/assessment of ageing users or those with degenerative conditions • B etter use of Committee’s time and resources by investigating high-speed car accidents For further information visit: www.aph.gov.au/Parliamentary_Business/ Committees/Senate/Rural_and_Regional_ Affairs_and_Transport/MobilityScooters

National Disability Insurance Agency (NDIA) to make improvements to the participant pathway Recognising continued NDIS planning process problems, the NDIA released in November 2017 changes to the participant pathway, including a pilot already underway in Victoria, prior to a national rollout.

Pilot key features include: • A consistent point of contact who understands a participant’s circumstances – generally, a Local Area Coordinator (LAC).

• F ace-to-face pre-planning meetings with the LAC to prepare participants for their planning meeting, and similar follow-up meetings, including a support person and NDIA delegate, to finalise the NDIS plan.

• V iewing of a working version of participants’ plans, and time for questions and feedback prior to plan finalisation.

An NDIS Participant Reference Group comprising people with disability, their family and carers will support the delivery of pathway improvements.

After first meeting in January this year, monthly meetings will: • Contribute to pilot evaluation • S upport the design of resources and information materials • I nform the design and development of proposed scheme improvements

POLICY & ADVOCACY

Squeaky Wheel

2017 Federal Government Inquiry into Transitional Arrangements for the NDIS

Success would enable people with disability to have access to another recreational activity which can also be ... funded under the NDIS.

The SCIA Policy and Advocacy team lodged an inquiry submission highlighting; • C oncerns regarding NDIS interaction with health services • I nconsistencies, lack of support and services for over 65s • C ontinuity of Support program service gaps • O ngoing transport funding issues and access to taxi transport subsidy schemes following government policy changes Our team addressed the Committee at a public hearing in October 2017, raising issues concerning gaining access to Community Health for new NDIS participants, ongoing plan implementation and assistive technology problems; particularly, prompt repairs and maintenance funding.

It was heartening that our concerns were acknowledged in the February 2018 NDIS Transition final report recommendations. The first four deal directly with improvements in health and disability areas, establishing a dedicated NDIS Unit to improve the patients’ pathway to avoid discharge delays and being away from nursing homes. Also recommended was a review of current supports and funding for over 65s to develop a strategy addressing current shortfalls.

View the full report at: https://www.aph.gov.au/Parliamentary_ Business/Committees/Joint/National_ Disability_Insurance_Scheme/Transition

Campaign for off-road ultralight vehicles to enable access equality As reported in the Spring 2017 issue of Accord, SCIA Policy and Advocacy has been lobbying NSW Members of Parliament and bureaucrats to enable accessible ultralight off-road recreational vehicles to be used by people with disability at designated off-road areas near Stockton Beach, Newcastle, NSW.

Similar to off-road vehicles already approved to access the same areas, these accessible ultralight off-road vehicles are considered safer as they include seat belts and roll bars. We anticipate being able to resolve the issue although several government departments need to amend their regulations and policies. Success would enable people with disability to have access to another recreational activity which can also be made possible with the assistance of support workers funded under the NDIS. After SCIA Policy and Advocacy sought a meeting with Tim McCracken, MP, Member for Newcastle, we were granted a meeting with a National Parks and Wildlife Service representative who informed us that approval to access the area has to be considered and granted by the Stockton Beach Board of Management first before it can be considered and approved by the NSW Environment Minister.

SCIA Policy and Advocacy anticipates we'll be able to resolve the issue with a positive outcome although there are a number of complex levels of administration and authority that need to be amended.

We'll provide an update in the next Accord. www.scia.org.au 25

POLICY & ADVOCACY Squeaky Wheel

Accessible public transport SCIA Policy and Advocacy is a member of the NSW Accessible Transport Advisory Committee (ATAC) for direct input to government policies and procedures for public transport services, facilities and infrastructure, including point to point services such as taxis and Uber.

The NSW Government should be commended for maintaining ATAC because it influences government policy and procedures and provides advice and input on the design, facilities and services of the new train fleets being rolled out, including the intercity trains running between Sydney and Newcastle, and the Blue Mountains and South Coast.

ATAC comprises some 20 disability, aged and community organisations.

However, due to the NSW Government withdrawing funding for disability services from 1 July, five ATAC members announced their withdrawal as they may not be in existence – just one of the unforeseen outcomes caused by the NSW Government’s decision which continues to negatively impact future accessible transport services and facilities.

SCIA is one of several organisations campaigning to have the NSW Government reverse its decision. It is extremely important for funding to continue as the NDIS is aimed at supporting 460,000 people nationally – approximately 10 per cent of the disability sector. Additionally, 90 per cent of people with disability ineligible for the NDIS will still need access to disability advocacy and information services.

NSW wheelchair accessible taxis The NSW Government released the Point to Point Transport (Taxis and Hire Cars) 2017 Regulations last year, with the gradual rollout completed on 1 February.

The Regulations contain several clauses relating to wheelchair accessible taxis (WAT) including: • I nterior minimum allocated space for the passenger using a wheelchair • R amp and wheelchair restraint standards 26 accord magazine

• W AT drivers achieving competency in assisting wheelchair users in and out of the vehicle Regulations Clause 82 states WAT drivers must not start the taxi meter before the vehicle is ready to safely transport the passenger.

Clause 82 Wheelchair accessible taxis (1) Despite any other provision of this Part, a driver of a wheelchair accessible taxi to which a fare calculation device is fitted must not start the device before the taxi is ready to safely transport a passenger in a wheelchair.

(2) For the purposes of this Part, the hiring of a wheelchair accessible taxi by a person using a wheelchair terminates (unless it is sooner terminated) when the taxi stops at the hirer’s destination.

All WAT drivers are taxi drivers and normally entitled to start their meter when they arrive by (but not before) the booking time. SCIA Policy and Advocacy raised the following issues at the NSW Taxi Council WAT Advisory Subcommittee meeting on 26 February: • H ow will Clause 82 be implemented and monitored to ensure WAT drivers are informed?

• H ow will they be monitored to ensure they comply?

• H ow will WAT passengers with disability be informed about it?

• H ow would they report the WAT driver starting the meter early?

• D oes clause 82 need to be clarified or rewritten to avoid any conflicts between WAT drivers and passengers?

We’re also advocating that NSW Transport informs WAT users about the Regulation changes, possibly providing WAT users with a "Rights and Responsibilities" brochure.

We’ll report any response in the next Squeaky Wheel.

If any NSW WAT passengers have service issues they’d like to discuss please contact SCIA Policy and Advocacy: Phone: 1800 819 775. Email: policy@scia.org.au ■

www.scia.org.au 27

REGIONAL ROUND UP Illawarra/South Coast - Mel Gorman

Our regional people

Lift and change facilities installed at Kiama Harbour

Spinal Cord Injuries Australia’s (SCIA) regional team supports people with disability living in regional areas through their NDIS journey and in exercising their rights to choice and control.

They are committed to creating independence, dignity and unlimited opportunities for people living with spinal cord injury and through our Support Coordination service have achieved some remarkable outcomes for people. Our team looks forward to hearing from you.

Kiama Council has opened a new adult lift and change facility at Kiama Harbour. Hailed as “life-changing” by people with disabilities, it means that all members of the community can now more easily participate in everyday local activities such as going to the beach. People with high support needs will no longer need to go home, wearing wet swimmers and wrapped in a towel, to tend to their needs.

Lee Clark Northern Rivers Shop 27, Alstonville Plaza, Main Street, Alstonville NSW 2477 T: 02 6628 3409 M: 0421 055 992 E: northernrivers@scia.org.au

This excellent facility, which has been provided through Kiama Council’s Disability Inclusion Action Plan, is larger than a standard-size accessible changing facility. It includes some great extra features such as a ceiling hoist and change table to cater for a broad range of requirements.

The change room is located opposite the boat ramp and can be opened using an MLAK key available from the Kiama Visitors Centre or Kiama Council administration building.

Free workshops for carers in 2018

Craig Lees Central West/Mudgee PO Box 1140 Mudgee NSW 2850 T: 02 6372 1892 M: 0413 367 523 E: centralwest@scia.org.au Glenda Hodges New England 20 Murray Street Tamworth NSW 2340 T: 02 6766 6422 M: 0427 257 471 E: newengland@scia.org.au Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower Wollongong Central, 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au

This year, the Illawarra Shoalhaven Local Health District is running a series of workshops specifically for carers. The workshops, which run one day a week for three weeks, are free and suitable for people who care for a family member or friend who has a chronic or mental illness, a disability or who is frailaged. Carers will learn how to manage stress and also have the chance to meet and network with other carers to find out about services that can really help. The course covers a variety of topics including respite, home modifications, NDIS, Centrelink carer payments, advocacy, carer health and wellbeing, community transport and much more.

The workshops will be held at Shellharbour, Bomaderry, Fairy Meadow, Milton and Dapto throughout the remainder of 2018. For more information or to register for a workshop contact Evelyn (Fairy Meadow, Dapto or Shellharbour) evelyn.jelercic@health.nsw.gov.au or Carla (Bomaderry and Milton) carla.farrar@health.nsw.gov.au

28 accord magazine

REGIONAL ROUND UP New England - Glenda Hodges

Northern Rivers - Lee Clark

Changes in the region

NDIS support

At last the hot weather of summer is starting to leave and cooler days and nights have begun to appear. I know there are many people who enjoy the summer heat but the extreme temperatures we’ve been experiencing this year seem to have been going on forever. All I can say is bring on the change!

Welcome to the cooler months!

And change is exactly what our sector has been going through for some time now, with the NDIS being a long continuum of adjustments. Residents in the New England region have been in the NDIS for over 18 months and are already reviewing their next plan. Many are a lot savvier this time round as their needs are more definitive and well supported by appropriate support services and providers.

However, no matter how well prepared a person is going into their plan review, many outcomes appear to be inconsistent with their needs. Reviews, change of circumstances and now applications for a review of a reviewable decision are becoming the norm for many participants.

One issue for many New Englanders has been the lack of services for an appropriate report or service provision before funding will be allocated. For example, insufficient occupational therapists trained in assessing home modifications and registered builders are both major concerns. For many, the NDIS has caused a lot of issues which continue to be confusing and ever more stressful as time goes on. As one wag remarked, “The aeroplane is still flying but with many Band-Aids holding it together!”

Another change is my upcoming retirement after enjoying just on nine years with SCIA. Sadly, this is my last update for Accord magazine which has proven to be a well-worn whipping post for my frustration, particularly since the advent of the NDIS. I have witnessed many changes during my time with the organisation and have followed many new learning directions. I consider being part of this great team of individuals to be a fitting end to my career. I’ve met so many different people, both in the regional community and within SCIA, with whom I have really enjoyed working. To the regional team – Lee, Craig, Mel and Steve, and my Peer Support worker in Armidale – thank you for your friendship; it’s been fun and interesting. To my managers – Rob and now Olivia – thank you both so much for your support and friendship. My very best wishes go to SCIA for an exciting future. I am sure that it will continue to grow and offer invaluable support to those who need it.

And now for a touch of “gray nomading”…

It has been a very busy few months, assisting existing and new members and clients of SCIA to get NDIS ready.

I have attended several planning meetings with clients and the Local Area Coordinators (LACs) to not only support them, but to help voice their requests for what they want and need in their NDIS packages. It has been a real struggle as people don't seem to be heard by the LAC when they request Support Coordination or Plan Management to be included in their plan.

This has caused a great deal of emotional distress for some, and often tears flow as we leave the planning meeting as they feel they have not been heard by the LAC who is supposed to be the information gatherer for the NDIA Planner, who will then develop the plan. The frustrating part is that our members and clients would really benefit from these two inclusions in their plan as they will not be supported sufficiently by the LAC after their plan has been implemented. LACs do not have enough time, nor do they know the person with the disability, or how it affects their everyday life.

If you feel you were not heard and would like support in getting your plan reviewed, please don’t hesitate to contact me so we can work towards getting the reasonable and necessary supports that you have choice and control over.

As I have stated quite a few times lately, "you don’t know what you don’t know," so Support Coordination can be the most important part of an NDIS plan to make it work for the recipient.

Creative arts group Allan Chesworth, our local volunteer Peer Support Officer, is organising a creative arts group for anyone with an interest in "all things creative." Alan, who is always on hand to offer peer support by way of a chat over coffee or on the phone, is a talented artist himself…although he says he is not an artist, just a creative person.

Allan encourages locals to bring along any creative projects they're working on and to share ideas in an informal setting.

This may be painting, crocheting or any other medium. If you would like to join this group please contact me on 0421 055 992, or Allan on 0416 141 405, and we can give you further details.

Allan is also available if you just need someone to chat to, and is a very good listener, so make the most of having this peer support available. Maybe you would like to get together with a group of peers for lunch or go tenpin bowling. If you have an idea, please don’t hesitate to contact us.

SCIA is here for you for a very long time to come, so don’t forget to support us, so we can support you. www.scia.org.au 29

REGIONAL ROUND UP Victoria - Naz Erdim, AQA Victoria's Spinal Injury and Support Network (Spire) (nazimerdem@spire.org.au)

SCI Community network groups It’s been a fantastic year for our SCI Community Networks.

In addition to the regular people who attend, we have also seen many new faces turn up.

Each of the network groups has begun to be self-sufficient in setting agendas and having special guest speakers and organisations giving presentations. The groups are not only there to share information and give each other advice, they’ve also been educational. Some of our presenters or presentation topics have included: • Council members • Financial advisors • NDIS specialists • Lawyers • Nurses • Pressure care • Pain management • Accessible travel • Leisure • Mental health.

Assessment Signatory Scheme report (www.vicroads.vic. gov.au/registration/vehicle-modifications-and-defects/vehiclemodifications/ vass-approval-certificate) stating the vehicle has been significantly modified.

Drivers seeking the registration concession will need to provide a Vehicle Assessment Signatory Scheme certification to VicRoads prior to registering their vehicle. The Transport Accident Commission charge will still apply.

Eligible disabled drivers will continue to be able to access the motor vehicle duty rebate available through the State Revenue Office at www.sro.vic. gov.au/node/1505.

Concessions already available for registered operators of vehicles modified to carry a passenger occupying a wheelchair will also continue to apply.

Late last year, we welcomed the Geelong SCI Community Network to the fold in joining Ballarat, Bendigo and Shepparton.

Next, we hope to roll out into Eastern Victoria, with Warragul looking likely. However we welcome suggestions to where this could be introduced.

If you haven’t been to any of the networks yet, please come along to a meeting in the coming months. We also warmly welcome friends and family.

For further information on any of the SCI Community Network Groups, please visit www.spire. org.au/community/ community-networks, or contact Spire by email info@spire.org.au or call 03 9489 0777.

Disabled drivers vehicle registration concession The Victorian Government is cutting the cost of registration for wheelchair users who have had their vehicles significantly modified to allow them to drive.

Disabled drivers will now be able to apply for a 100 per cent concession on their vehicle registration fee.

For many of the 2,500 Victorians who own vehicles modified to suit a wheelchair user, this will mean a saving of up to $290.40 each year.

To be eligible, a vehicle must be fitted with hand controls for accelerating and braking, and have undergone a Vehicle 30 accord magazine

Oiii launches in Melbourne A new government-approved taxi service is launching in Melbourne and it combines the safety of taxis with the ease of rideshare.

Oiii is a service that uses a regulated taxi meter and a smartphone taxi booking application. For the budget conscious there are some advantages to this new service, including; no surge pricing, no booking fees, regulated government tariffs and no credit card surcharges.

Oiii accepts Multi Purpose Taxi Program cards and currently has over fifty maxi taxis suitable for passengers using wheelchairs, with drivers who are accredited to operate wheelchair lifts. Additionally, passengers with visual or hearing impairments can use the accessibility features of the App in Android or iOS. For further details, please visit www.oiii.com or call 03 8394 6812. ■

TECHNOLOGY Graeme Smith, Ability Technology

iPad to control live TV Using a smartphone for emergency calls at night I would like to use voice dialling on my mobile phone to get help should I need it during the night. This seems a simple solution. However, I’m just wondering what happens if the person I ring doesn’t answer, and I get stuck in their voicemail message service?!

Voice dialling has improved considerably and is now quite effective. But you are right: it can be risky to rely on it at night when you’re in bed and you have an urgent need. Another option, still using your phone, is to send a text by voice. This could be something like, “Hey Siri, ask John Brown to call me.” John will receive a text asking him to call you and you can then use the Auto Answer feature of your phone (now in iOS11 under Accessibility, and in Android through various apps). We also found an Android app that allows you to set time limits for calls to nominated contacts to avoid the specific problem you’re concerned about.

Apps to help with writing and memory I use my iPad for lots of things, but I haven’t found an easy way for me to control my television when I’m in bed. I can’t use a remote control. Is there a solution that won’t cost me a lot of money?

There are a number of ways to approach this. You could use an intermediary device (such as the Logitech Harmony) to control your TV through its own app on the iPad. Another option is to use an app created for your smart TV. For instance, LG and Samsung have their own iPad apps. Finally, you can use the iPad itself as your TV. All the main channels have their own apps showing live TV (7plus, 9Now, Tenplay and Freeview for ABC and SBS). Most of these allow you to throw the image to your TV, via AppleTV. They also have lots of playback of shows available, such as ABC iView and SBS On Demand.

I have a friend with a brain injury who has recently purchased an iPad. He has problems writing text, as well as remembering activities and events from the recent past. Are there apps that can assist with such issues?

Some apps you could try for writing include the Keeble keyboard (see picture), iReadWrite, iWordQ and CoWriter BE. Your friend would need to see and hopefully trial these and others, to see which suits their needs best. Features such as text-to-speech and word prediction can be very helpful.

For memory support, using alerts within the built-in calendar app can be helpful. For example, Planner Pro is an app that adds a task list. Tasks can be prioritised and can be set to send alerts as well. For remembering events, an app such as Pictello can also be helpful.

Simple desktop My partner has reduced vision and cognitive issues following an accident several years ago. We want to get a tablet computer, but we need some enlargement and simplification of the screen, as most are too fussy and confusing for him. What are the options?

There are several good simplified desktops available for Android. Two notable ones are Wiser Launcher and Big Launcher. Options are available for Windows tablets through apps such as Eldy (see picture - also available for Android) and Grid 3 (quite expensive). There are no enlarged icons for the iPad, but the Launch Center Pro app allows you to reorganise your apps in a user-friendly way.

32 accord magazine

It simply allows the creation of stories, combining pictures and text which can be sufficient to enable someone to recollect important events. Further support, if the individual can’t remember multiple steps in a process, can be accessed by using sequencing apps such as CanPlan and FirstThenVisualSchedule (FTVS).

These break down multiple steps in a process into single steps that are more easily managed.

TECHNOLOGY

One-handed typing options I am restricted to the use of one hand, following an accident. I don’t like speech recognition but wonder if there are other options I could consider.

A compact keyboard may be helpful as it cuts down the range of movement required. Another option is to use a typing tutorial for one-handed typing; this is called Five Finger Typist and would give you a technique that you could use on any keyboard. Finally, there is the HalfQWERTY keyboard and the Half Keyboard (for left hand use only).

This is a facility that enables you to access the full functions of the keyboard from just one side. It takes some practice, but speeds of up to 60 wpm have been recorded with this technique.

It’s also worth checking that you’re using efficiency features in software such as Word, Autotext 2018 0404including SCIA PQBSA Svcs 135 x 90 APRIL OL.pdf and AutoCorrect, style sheets and spelling correction.

Mobile phone simplified dialling Is there an easy way for people to make phone calls to just a few people?

Phones seem unnecessarily complex and there are lots of buttons to press to make a simple phone call.

Picture dialling options are probably the simplest of all. For landline phones, the Care80 phone by Oricom allows direct dialling from six large buttons (see picture). Photos of individuals can be placed under the plastic tabs on the buttons.

Photo dial options are also available on iOS and Android phones. They simplify the dialling process greatly, allowing calls to be made without the need to remember or dial numbers.

1 4/04/2018 12:47:11 PM

If you have any technology related questions contact the Ability Technology team at info@ability.org.au

Technology n

C

means

Independence

n

Productivity

n

Connection

Where do you start?

M

Y

CM

MY

CY

CMY

K

www.ability.org.au 02-99079736 Helping you do more www.scia.org.au 33

INFORMATION AND RESOURCES

My Next Move Forward by Tash Schuh Following on from the success of My Last Step Backward, Tasha Schuh tackles more life issues with My Next Move Forward. Now a writer, speaker, former Miss Wheelchair USA and founder of a national support network, Tasha asks herself, “Am I worthy of love?” Taking a leap of faith that leads her to meet her soulmate, she explores love, sex and the work/love balance.

Borrow from the SCIA library or visit: http://amzn.to/2Gf7mga The View from Down Here by Sylvia Longmire Where do you want to roll today? Accessible travel writer, explorer, and photographer Sylvia Longmire pursues an active life from her power wheelchair. Unable to walk since developing MS in 2005, her sense of adventure remains undiminished as she documents and photographs wheelchair accessible destinations in vivid detail.

Borrow from the SCIA library or visit: http://bit.ly/viewfromdownhere Fueled by Misery: My journey through life with Muscular Dystrophy by Peter Li Peter Li’s early life story would leave most people without any reason to smile. As a Chinese immigrant to the US, all he wanted to do was fit in. As MD began to take over his body, he grappled with depression and questioned if the struggle was worth it. But Peter eventually finds a way to live life to its fullest.

Borrow from the SCIA library or visit: http://bit.ly/PeterLi Don’t worry; she’s a pain in the ass by Kasey Anne Miller A collection of stories about living with Friedreich’s Ataxia, Kasey Anne Miller gives a unique point of view from her life in a wheelchair. The book’s title comes from her dad; his way of saying that his daughter’s rare disease hasn’t been the end of the world some people seem to think it is.

Borrow from the SCIA library or visit: http://bit.ly/DontWorryBook In Sickness and in Health by Ben Mattlin Born with spinal muscular atrophy, Ben Mattlin went to Harvard, married an able-bodied woman, became a successful journalist and lives happily with his wife and kids. So what’s the big deal? Through conversations with other couples of varying abilities, ethnic backgrounds, and orientations, Ben explores if inter-abled love is as unusual as onlookers seem to think it is.

Borrow from the SCIA library or visit: http://bit.ly/InterabledRelationships Living with a Spinal Cord Injury by Spinal Cord Injury Quebec Canada A hit with health and social services professionals since it first came out in 1996, this updated version includes new input from dozens of psychiatrists, nurses, occupational therapists, sexologists, psychologists and more.

Available from https://lesionmedullaire.com/en/

These publications and resources are available for loan or download from the Spinal Cord Injuries Australia SCI Resources and Knowledge Library. To borrow, visit library.scia. org.au, or contact us at info@scia.org.au or 1800 819 775. In addition to the library and a comprehensive range of information on our website, SCIA offers help and advice to people with a spinal cord injury and similar disability, their families and carers through their Information Services. SCIA can be contacted at info@scia.org.au or on 1800 819 775.

34 accord magazine

REVIEW

“Come and Try” a great way to get up and go!

In 1999, a few years after sustaining paraplegia, Scott Wintle went along to a “Come and Try” day at SeaWorld on Queensland’s Gold Coast. Those first sessions changed his life and since then he’s gone on to win multiple world titles and a gold medal at the World Disabled Water Ski Championships.

What was it about water skiing that led you to attend a “Come and Try” day?

I was a windsurfer before my accident. Looking for a water sport that I could still do, I found a water ski “Come & Try” day organised by the Sporting Wheelies & Disabled Association (QLD).

Scott Wintle. Photo: Timbertop Photography

How did their team help cater for your disability on the day?

We had to check our safety gear and undergo a water test to assess our swimming ability. There are different water skis available to accommodate different levels.

At first, I tried the single ski but couldn’t get up due to my lack of balance. Then I tried a water ski that had short ski tips called outriggers. It gave me the stability and enabled me to get up and ride.

From then on, I was hooked!

How do you take a recreational sport to a professional level?

In January 2001, I was a spectator at the nationals which were being held at Marshall’s Lagoon at Nambour on the Sunshine Coast in Queensland.

Luckily, I’d packed my ski gear because I was encouraged to have a go, and I tried slalom and the jump for the first time. I was nervous, but was inspired by some of the other competitors who were visually impaired.

I thought to myself, “If they can do it without seeing the ramp then I can do this.” So, I went over the jump – and crashed! I felt that the boat hadn’t been going fast enough so the speed was increased and I landed the next two jumps successfully. I was thrilled!

to receive support from my workplace (BGW Group of Companies) and other fundraising activities.

What’s next on the horizon?

The Water Ski Nationals and then the World Championships in 2019. Those will most likely be my last competitive events as I plan to retire. I would really like to spend more time with my family. Working full-time and skiing professionally doesn’t give me much time with them.

As well as that, my body has endured a lot, it’s finally telling me to slow down!

Disabled water skiing has taken you all over the country and overseas to events such as the World Championships in the United States.

How do you find support to do this?

It’s never easy to find support. I couldn’t have attended the many national and international events that I have without the support of the Sporting Wheelies.

What advice would you have for someone who’s keen on giving this sport a go, but may be a bit hesitant?

Trial days are great because they’re taught in a safe environment. The water ski community are a great bunch and will always go out of their way to help everyone to enhance their experience and have a great time.

Unfortunately, they can no longer provide the same support due to funding cuts. I’m very lucky

For more information about attending a “Come and Try” day, visit disabledwaterski.com.au. ■ www.scia.org.au 35

CALENDAR

Events INDUSTRY MAY 2-4 May 2018 Connecting Up Conference 2018 Hilton Hotel, Brisbane www.connectingupconference.org 16-17 May 2018 ATSA Independent Living Expo 2018 Melbourne Showgrounds, Melbourne www.atsaindependentlivingexpo.com.au 25-26 May 2018 Sydney Disability Expo Southee Complex, Sydney Olympic Park, Sydney www.sydneydisabilityexpo.com.au 30-31 May 2018 ATSA Independent Living Expo Claremont Showground, Perth www.atsaindependentlivingexpo.com.au

JUNE 25-26 June 2018 The Wellness Show International Convention Centre, Sydney www.wellnessshow.com.au

JULY 9-10 July 2018 28th Annual SINA Conference (Spinal Injury Nurses Association) Royal Rehab, Ryde, Sydney Registration forms at www.sina.org.au

36 accord magazine

U

M A R W G O O N PR T

O

YOUR CHOICE YOUR CONTROL

30-31 MAY 2018 CLAREMONT SHOWGROUND, WA

16-17 MAY 2018 MELBOURNE SHOWGROUNDS, VIC Pre registered delegates will receive: Free

Free

Free

Free

Entry

Parking

Coffee

Conference Program

REGISTER NOW phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au WA Principle Supporter

Media Partner