Accord Autumn 2019

Autumn 2019

An unexpected journey The highs and lows of navigating a new path

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CONTENTS 02 03 04 06 08

From the CEO From the President News Fundraising An Unexpected Journey

12 Everyone is Different 14 Travel review: Africa 18 Daily living: Wheelchair lifehacks 20 Policy and advocacy 24 Regional round up

28 Technology 30 Information & resources 32 Calendar

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

Designer & Editorial Manager Shauna Milani Sub Editing Proof Communications 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

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n the last edition, I updated you on the activities and initiatives Spinal Cord Injuries Australia (SCIA) had been working on and our focus for 2019. This edition I would like to focus on our advocacy services and activities.

Our merger with Ability Advocacy, an advocacy organisation working in the Northern Rivers Region of NSW, is complete, which means that SCIA now has two advocacy teams. We see this as a core service offering which allows us to support people in dealing with difficult and often very complex issues. It also gives us greater scope to advocate on systemic advocacy issues at both a regional and metropolitan level.

In February, we participated in the Stand

By Me Rally held in Sydney’s Martin Place.

It was a terrific gathering where all NSW advocacy organisations came together to highlight the importance of advocacy services and of the NSW Government continuing to fund these services.

Although a long-term commitment is yet to be announced, we’ll await the outcome of the upcoming Federal Election to determine actions to ensure these services will be funded in the future.

At present we’re preparing submissions as part of the Aged Care Royal Commission.

Extremely concerning are the current differences in support of people with disability who are over 65 – particularly evident in funding gaps between the NDIS and the Aged Care system. We’re also working as part of the Australian Spinal Injury Alliance at a national level to arrange meetings and write submissions directly to government. We’ve also recently sought direct feedback from our members and clients who are over 65 to gather up to date information and case studies on the impacts of the current system.

The Australian Government has released draft Terms of Reference for the Royal

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Commission into violence, abuse, neglect and exploitation of people with disability.

The terms are broad; a move that Social Services Minister, Paul Fletcher, says is deliberate to ensure that they account for a greater number of people at risk. The terms note that the Commission should investigate violence, abuse, neglect and exploitation of people with disability “in all settings and contexts”, including disability support services, schools, workplaces, homes and hospitals. SCIA has reviewed the draft Terms of Reference and provided feedback.

SCIA was successful in being appointed as a member of the new NDIS Specialist Disability Accommodation (SDA) Reference Group. The Government established this group in February to support the development of the SDA market, increase choice and control for participants, and ensure the long-term viability of SDA investments under the NDIS. Members of the group were selected based on their ability to most effectively represent the views of their stakeholders, and will consult with other key stakeholders where appropriate, including state and territory governments. The group includes 15 appointed representatives from across the disability sector, including SDA providers such as community housing providers, investors and financiers, developers, and research and policy organisations. It also includes participants and government representatives.

The National Disability Strategy 2010-2020 is also under review in preparation for a new strategy from next year. SCIA will be actively participating in the review process, including completing relevant surveys and attending focus groups.

Further information on these advocacy activities is included in this edition.

Advocating for our members and clients is, and will continue to be, a priority for SCIA. ▪

FROM THE PRESIDENT

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ou may have noticed of late the Stand

By Me campaign being run by the New South Wales Disability Advocacy Alliance. Their rallies are just one way they’re currently highlighting the cuts to funding for advocacy. When people with a disability unite in such a way there can be no denying that they’re a force to be reckoned with.

Spinal Cord Injuries Australia (SCIA) is a peak body in the area of disability and spinal cord injury (SCI) in Australia. It’s also a member-based organisation. In a similar way to the Stand By Me campaign, it’s our membership that gives us strength to advocate on issues that affect us all.

With this in mind, the Member Issues Sub-Committee (MISC) was established a few years ago by the SCIA Board to hear the thoughts, grievances and recommendations of our members. We want you to communicate with us and invite your input. We want you to know that you are almost certainly not alone with your disability-related issue.

Most recently, the MISC examined the effect that the NDIS has had on the care industry and what SCIA could do to alleviate our members’ problems. Issues raised included not only a lack of carers, but a lack of suitably qualified carers. The effect of poor care procedures on health is a real threat amongst the SCI community.

On a final note, I was recently saddened to hear of the passing of Kerri-Anne Kennerley’s husband of 35 years, John Kennerley. He’d endured an SCI in March 2016 but, as is so often the case after such an injury, his final downfall was pneumonia.

My heart goes out to Kerri-Anne and John’s family and, in memory of John, I encourage all members to have a flu shot before the winter season begins. The jury may still be out deciding whether this helps prevent a bout of pneumonia, but why take the risk! ▪

Not so long ago, members of the MISC were instrumental in having the taxi transport subsidy increased for wheelchair users. Other transport issues, including air and train travel, have been raised and discussed with a view to SCIA providing a united voice to the respective bodies.

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NEWS

Disability groups come together to rally for advocacy funding In February, Spinal Cord Injuries Australia (SCIA) joined hundreds of supporters in Martin Place, Sydney, to oppose NSW Government threats of cuts to disability advocacy.

Disability advocacy funding across NSW is set to lose $13 million between July 2019 and July 2020. People with disabilities, their friends, families and disability groups gathered in a sea of Stand By Me purple shirts to hear individuals share their first-hand experiences of where disability advocacy had helped them and the wider community.

Physical Disability Council of New South Wales (PDCN) President, Chris Sparks, led the event and members of the Labor, Greens, Independent, and Christian Democrats parties spoke about ongoing disability advocacy funding as a top priority at the NSW state election.

PDCN CEO, Serena Ovens, also announced she’d received second-hand information just hours earlier that the NSW Government would provide the sector with short-term funding.

“Of course, this is good news,” said Serena. “However, it doesn’t address the long-term funding issue. And we won’t believe anything until we see it in writing and get the courtesy of a call ourselves.”

The NSW Government were notably

SCIA staff at the rally.

absent from the rally and, even at postelection at the time of writing this, hadn’t provided any confirmation for the shortterm funding referred to by Serena.

SCIA Policy and Advocacy Manager, Tony Jones, believes that SCIA will be affected beyond the NSW Government’s 2020 deadline and says the government has a responsibility to continue advocacy funding, just as other states have made a commitment.

Budget surplus to be built on NDIS Deputy Leader, Josh Frydenberg, revealed at the Federal Budget, that the National Disability Insurance Scheme (NDIS) had underspent by $3 billion this financial year. This has led to discussion about using the underspent money as a means to push the Federal Budget into surplus for the 2019 – 2020 financial year.

The Federal Government says that, based on State Government estimates, the NDIS demand-driven system is the reason for the underspend and it had overestimated the amount of people using the NDIS services.

Tony Jones, SCIA Policy and Advocacy 4

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Manager, says that the reason for the underspend is the poor management of the NDIS and a slow rollout rather than a lack of demand for access and services.

He believes the money should be reinvested into the NDIS by boosting staff numbers and providing adequate training and knowledge.

“By providing people quality, fit-forpurpose NDIS plans, you’re resolving the ongoing issue of participants calling for unscheduled reviews and general dissatisfaction with the very slow review process.”

“There are people who still face barriers to transport, health, education, housing and the workplace,” says Tony. “It’s such a small amount of money that goes toward supporting 1.4 million people with a disability who live in NSW; the government has no alternative but to reverse its decision.”

Keep up to date with the latest developments in NSW disability advocacy funding at https://standbyme.org.au

NEWS

SCIA welcomes a Royal Commission into disability abuse The Federal Government has announced a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Disability advocates have been calling for such an inquiry for some time and the government has finally agreed to it after gaining support from state and territory governments. A consultation period was open for two weeks seeking comments on the draft terms of reference, attracting 3700 responses, which have now been finalised.

“SCIA is pleased that a Royal Commission has been finally agreed to after advocates have been calling out for an inquiry after many years of seeing abuses and neglect perpetrated against people with disability. We are thankful that the terms of reference are broad and a substantial time period has been set down for the inquiry to take place. However we are disappointed that a redress process has not been announced,” says Tony Jones, Policy & Advocacy Manager, Spinal Cord Injuries Australia.

At a cost of $527 million – a record amount – and running for three years, the Royal Commission will be based in Brisbane. Two of the six commissioners have a lived experience of disability – Dr Rhonda Galbally AC and Alistair McEwen.

The Terms of Reference can be found on the Department of Social Services website: https://www.dss.gov. au/disability-and-carers

SCIA welcomes two more Board members SCIA is pleased to welcome two new directors to our Board: Leesa Addison and George Panos.

Both individuals complement the ongoing growth of SCIA, supporting people with SCI and similar disabilities to overcome barriers, achieve their goals and live fulfilling personal, social and professional lives.

Leesa has worked as a Chief Information Officer for both membership and disability organisations. She has broad experience working across all types of business structures and sizes, and says, “I’m excited to join the SCIA Board at this time in the organisation’s history, with the growth of the digital economy bringing new solutions and service opportunities to improve the lives of people with disability.”

George is currently the Chief Financial Officer of an architectural and design practice, and has extensive business, commercial and operational experience across several industries. He is a qualified accountant and a lawyer, and has also completed an MBA. “Having witnessed the difficulties my uncle experienced as a paraplegic after a car accident, I’m passionate about improving the services for our members and very honoured to be an SCIA Board member,” says George.

SCIA Chairman, Michael Rabbitt, says he’s thrilled to welcome Leesa and George to the Board as their experience will contribute towards SCIA’s future growth and impact within the community. “They both bring a unique business perspective and a set of skills to SCIA that will help us to achieve our goals in 2019 and beyond.”

A big win for accessible adult change facilities SCIA welcomes the announcement that from May, accessible adult change facilities will be included in specified public buildings and major public spaces across Australia, such as large shopping centres, sports stadiums, aquatic centres, museums, art galleries, and airports.

Toilet facilities suitable for the needs of people with severe and profound disability will be built to Accessible Adult Change design specifications and must meet the requirements mandated by the National Construction Code.

This very positive announcement will increase the number of facilities that must include a height adjustable adultsize changing bench, and ceiling track hoist system, and will enable people to get out and about, maybe for the first time, knowing that the facilities they need are now available.

For further information: https://www. abcb.gov.au/Resources/Publications/ Consultation/Accessible-adult-changefacilities-in-public-buildings

National Road Safety Week SCIA is partnering with National Road Safety Week (6-12 May), advocating for change to address the number of serious road crashes that result in up to 1,220 deaths, and 35,000 injuries each year.

Over 30 per cent of spinal cord injuries (SCI) are the result of vehicle crashes, highlighting the importance of raising awareness and spreading the message of “Drive so others survive.”

National Road Safety Week is an annual initiative from the Safer Australian Roads and Highways (SARAH) Group, partnering with road safety organisations and governments to honour those who have lost their lives or been injured on Australia’s roads. The week highlights the impact of road trauma and campaigns to reduce the number of crashes.

We encourage our members and all Australians to show their support for the campaign by purchasing and displaying a yellow ribbon and sharing SCIA’s social media campaign during this period.

For further information or to purchase your yellow ribbon visit www.roadsafetyweek.net.au www.scia.org.au 5

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 for some inspiration and get involved this year. scia.org.au | 1800 819 775 | info@scia.org.au

FUNDRAISING

Star fundraisers A big “thank you!” to Dexter, who is taking on the challenge of running the HBF Run for a Reason half marathon in Western Australia, to raise funds for Spinal Cord Injuries Australia (SCIA) – a cause which has recently become very close to his heart.

Dexter and his girlfriend were driving along a dark stretch of road in Esperance late one night when, after rounding a corner, they were confronted by an upturned four-wheel drive, lying horizontally across the tarmac. Although Dexter hit the brake immediately he wasn’t fast enough, and his car crashed into the stricken vehicle. Sitting in the passenger seat, Dexter’s girlfriend suffered two spinal fractures and was rushed by ambulance to Esperance Hospital.

With his partner now recovering in a spinal brace and thankfully set to make a full recovery due to the amazing efforts of the hospital medical team, Dexter knows first-hand how serious and life changing a spinal cord injury (SCI) can be. In fact, road traffic accidents are one of the most common causes of an SCI and Dexter is keen to acknowledge all the practical support SCIA provides for sufferers and their families.

His hair-raising experience is what’s inspired Dexter to commit to raising money for SCIA, and he looks set to raise an amazing $2,500. We’re thrilled to have him on the SCIA team!

We continually need more support to keep our vital services going, so if you’ve been moved by Dexter’s story and would like to fundraise for SCIA, contact us on 1800 819 775 or email info@scia.org.au

If you feel good when you read our star fundraiser stories, why not become one yourself? Contact us on 1800 819 775 or email info@ scia.org.au and get involved today!

Big Day Back helps buy new equipment for NeuroMoves Our NeuroMoves gyms across the country were hugely excited to receive a range of new equipment, thanks to your support and generosity for the Big Day Back 2018.

We’ve now got new ski ergs for gyms in Sydney and Melbourne, a new TheraGun in Adelaide and a cable machine in Perth. These essential pieces of equipment will help individuals to improve their flexibility, movement and endurance and most importantly help them to reach the goals they’ve set for themselves. A big thank you to all those that helped make this happen!

Let’s make 2019 even bigger!

The Big Day Back will soon be launching for 2019 and we want to make it bigger and better than ever!

We’re encouraging everyone to go big and challenge themselves and someone they know to raise money for SCIA on World Spinal Cord Injury Day, 5 September. If you can’t do something on that day, then you still have the whole of September to do something for SCIA, so don’t hesitate to get involved.

Whether it’s a skydive, a hundred sit ups, a sporting event, giving up chocolate or even just organising a morning tea, we need your help to raise money for additional NeuroMoves equipment so we can reach even more people with this much needed service.

Happy clients using the new equipment purchased with Big Day Back proceeds.

Save the date: The Victorian Team Trivia Championships, Melbourne, 22 November Fancy yourself as a bit of a trivia buff and want to put your general knowledge to the ultimate test? Save the date and get your team together to battle it out against some of trivia’s finest minds to be crowned Victorian Team Trivia Champions. Funds raised will go to SCIA. For more information call 1800 819 775 or email info@scia.org.au. www.scia.org.au 7

COVER

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UNEXPECTED JOURNEY Words: Susan Wood Photos: Phat Ngo

Matt with his wife Sherree.

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COVER

One of the challenges of an invisible illness such as MS was the uncertainty of his disability. For Matt, the first few years after his official diagnosis gave no indications it was causing a problem.

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t was while renewing his license in early 2003 that Matt Roger first noticed his vision was blurry.

Because it seemed like the sort of thing that happens to anyone from time to time, he didn’t think much of it and corrected the issue with glasses. However, shortly after, during a game of cricket with friends, his right leg gave way. That’s when he knew something was happening.

“It felt like I was carrying a ten tonne weight on my right leg.”

After numerous MRI scans and tests Matt suspected something serious was happening to his body.

Waiting for the results, he was reading Mysteries of the Mind by Richard Restak. The book described a process called demyelination.

The unfamiliar term characterised demyelination as damage to the protective covering to the spinal cord, optic nerves and connective nerves to the brain.

“It’s like a power cord,” explains Matt. “All your nerves are the wires inside and the plastic insulation is the sheath being stripped away.”

Matt began connecting the dots between his loss of leg function during cricket and his unusually blurry vision. Without knowing the official diagnosis, something about this made sense.

Matt had been working in the internal auditing department for Westpac HQ in Sydney and trying for a family with his wife of three years, Sherree. One Friday in 2003, three days before he was due to find out his MRI results, Sherree picked him up after work from the train station. Matt recalls that day exactly.

“She greeted me at the car saying ‘Hello, daddy.’”

The news was amazing and Matt considers it as one of the happiest moments of his life. Three days later, at his neurologist appointment, the MRI results were in: Matt was diagnosed with multiple sclerosis (MS).

“The book almost prepared me for what the specialist might say. At the time of the diagnosis I thought, ‘What does this mean for me as a newly married man with a family on the way?’”

It was a rollercoaster of emotions for both Matt and Sherree. The joy of expecting their first child combined with worrying about what MS could mean for Matt as the primary breadwinner was a lot of pressure for the couple and the situation became too much.

“To this day, I think the stress of that diagnosis and thinking ‘What if…’, caused Sherree to have a miscarriage,” says Matt.

Matt and Sherree eventually welcomed their son Mitchell in 2004, just 12 months after Matt’s official diagnosis. After some extensive reading on his condition, he started to question his ability to provide for three people, let alone bring another child into the mix. It was around this time that Matt started making contact with MS Limited, attending one of their seminars where he expressed his fears as a new parent.

Initial concern around the possibility of genetically passing on MS were pushed aside as his research indicated an approximately 3 per cent chance of passing it on to his children. In 2006, Matt and Sherree proudly welcomed their daughter, Hannah.

As the primary breadwinner, Matt was still working at Westpac when he started noticing the mobility in his face decreasing and his leg weakness increasing. In fact, one morning in 2012, he had a major relapse on his way to work – it had taken 20 minutes to walk the length of the platform.

“My father said to me, ‘Do you think you should get a walking stick?’, but there was a lot of pride there, so for a while I didn’t,” recalls Matt.

Admitting to himself about his disability was exceptionally hard to come to terms with, and left Matt feeling like he was grieving for a life that he had before. The muscle fatigue, weakness, increased mobility issues and, eventually, needing to use a suprapubic catheter felt almost surreal. “At some point you have to think about it and say to yourself that you really do need help.”

Matt opted to use a cane for some time before subsequently progressing to using a wheelchair.

Westpac was incredibly supportive, giving him the opportunity to work from home. When he was unable to drive in, he was allocated a parking place near lifts. Matt saw this as an opportunity to start educating people about disability.

“It so happened that I had a car park right next to our CEO, Brian Hartzer. I got to know his driver and he’d help me get the wheelchair in and out of the car. I used to see Brian a lot in the lift and we’d talk about my caravan adventures in the Kimberley in Western Australia and my family.”

Practical accessibility issues around his workplace had started to become very noticeable when Matt started using a cane. Disabled bathrooms that doubled as a shower became hard for him to use, with water on the floor causing him to slip on the tiles. Even a raised lip at the entry to the bathroom www.scia.org.au

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became difficult when he moved from using a cane to using a wheelchair.

“Because it’s an open access bathroom, anyone can use it,” he says. “Hardest is the fact that accessible bathrooms seem to have a door that’s so heavy it feels like a blast door leading into a bunker. I actually got stuck in there one day because I couldn’t force the door open wide enough for my wheelchair.”

With his newfound knowledge and experience as someone with a physical disability, Matt raised these concerns with his work colleagues. He was concerned about slipping and falling in the bathroom, or not being able to get out of the office in an emergency.

After lots of conversations with team members, Matt medically retired from Westpac in 2017 at the age of 43, feeling like he may not have been meeting his team’s standard of work. “I think it was denial on my part,” he says. “I kept pushing it.

I’d drive two to three hours to work and after a full day drive two to three hours back. For me, driving isn’t as much of a luxury as it is to other people.”

Once he was officially retired, Matt started to notice that his disability was affecting his children and the wider community in ways they hadn’t experienced when they were younger. People were asking Mitchell and Hannah why their dad wasn’t the same as other dads.

“Recently, a student was talking crap about me and my wheelchair, so Mitchell strongly defended me,” says Matt. “I think in part it’s a lack of understanding. I can’t do X, but I can do Y, or I can do X, but modified.”

Many people close to Matt initially didn’t understand the true impact his disability had on him, and found it difficult to grasp it until seeing it for themselves. Mentally, Matt was struggling with the stark contrast from being active and working with over 100 people to staying at home with decreasing mobility. It became socially isolating.

Matt found salvation and a sense of community in Spinal Cord Injuries Australia’s exercise service, NeuroMoves, out in Penrith. Unlike a regular gym, he feels like it’s a truly judgement-free zone where he can share war stories with people in similar situations.

Emotional support is very important for Matt.

He believes strongly in connecting with as many people as possible and sharing his positive outlook. For example, he actively volunteers as an MS Ambassador, offering lived advice and peer support to other MS sufferers in NSW, Victoria and Tasmania. Matt also volunteers at 10

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Matt and Sherree

Nepean Hospital as a long case patient for medical students. In June he will become a community member on Penrith Council’s Access Committee after years of trying to educate councils and businesses about access and inclusion issues facing people with disabilities in his community.

Matt admits watching the trajectory of his life “hasn’t been brilliant”, and there are days when he feels like he’s let people down. Heat affects his MS and there are times when he has to cancel plans at the last minute, but he feels incredibly fortunate to have a supportive network of family and friends.

All the traditional “manly” roles that he’d normally play as Sherree’s husband now fall to 14-year-old Mitchell and this gives his family a different dynamic.

“All this stuff you wouldn’t expect a kid to do, he does it,” says Matt. “When I have a fall in the shower, he helps my wife carry my naked arse across the floor to the bed. All dignity goes out the window.”

Matt considers Sherree to be his biggest supporter and advocate. Together for 26 years now, Matt and Sherree have shared a lot.

“Sherree is not only my wife, but my primary carer. She is so strong. When I’m at my weakest, she’s at her strongest. Without her I wouldn’t be the person I am today.”

Matt hopes through NeuroMoves to become strong enough for himself and his family, as well as continuing to educate as many people as he can about disability in the wider community.

“Even though I have a chronic disease, I still have a lot of value to give,” says Matt. “My view is that if even one person sees me and asks something and learns a little bit more, I’ve done my job.” ■

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

PEOPLE Dale with his dog Cash.

Dale Gavlik at NeuroMoves in Perth.

EVERYONE IS DIFFERENT: Take your time Perth NeuroMoves member Dale Gavlik shares his story about adjusting to life after his spinal cord injury following a BMX accident in 2012.

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rior to his accident, Dale Gavlik was an enthusiastic BMX cyclist, enjoying the thrill of the jumps and the competitive edge of the sport.

Two weeks after he turned 18, Dale was at his local track meet doing a last practice run. He took a jump, landed slightly off balance, rode onto the next jump and flipped over the handle bars, landing head first.

“I just lay there for a while, feeling pins and needles going through my body, waiting for everybody to ride past before I tried to get up. I thought I’d broken both my arms, because I was lying on them.

But I couldn’t move at all. And I thought, this is not good!”

Dale’s fall resulted in him becoming a C5 complete quadriplegic. “I pretty much landed on my head and shredded my spinal cord,” he explains.

PEOPLE It was during his 6-month hospital stay that Dale found out about Spinal Cord Injuries Australia’s exercise rehabilitation program, NeuroMoves.

It’s now been seven years since Dale’s accident. Here are his top five pieces of helpful advice for those who are just starting on their road to recovery:

“A lady whose son recently had a spinal cord injury (SCI) told my mum about NeuroMoves; how it had helped her son gain strength and independence. Three months after being back at home, I decided to give NeuroMoves a try,” says Dale.

1. E veryone is different. Even though they may have the same level of injury, you need to find what works best for you.

“I still lived with my folks in Toodyay back then, and we travelled for three hours, three times a week to attend NeuroMoves in Perth. It really helped me become more independent, learning how to transfer in and out of my chair, and I enjoyed the social aspects of it. I now go twice a week.”

Becoming independent was extremely important to Dale. However, living in Toodyay brought its challenges, such as no taxis and having to rely on family and friends for transport. Two years ago, Dale made the decision to move to Perth and start making a life for himself.

“Moving to Perth was the best thing I could have done to grow my independence. I’ve built my own house, am able to take care of myself, there are taxis to get me to where I need to go, and NeuroMoves is now only 30 minutes away compared to the 3-hour round trip I used to make.”

2. W hen you go home, or move into a new place, make sure your kitchen is wheelchair accessible so you can cook and prepare meals by yourself.

3. I use a Batec which helps me get around a lot more easily, without having to call a taxi. It’s an add-on powered hand bike, which you simply click on the front of your wheelchair, turning it into a motorised tricycle.

4. M y assistance dog, Cash, has been an invaluable support since I’ve moved in by myself. If you have problems with hand function, then an assistance dog is great to help you pick up things, even opening and closing doors.

5. I f there’s a NeuroMoves in your area, definitely go check it out. ■

The next step in Dale’s journey was to figure out what to do with his spare time. “I started to think about what else I could do with my time, besides going to NeuroMoves and playing Xbox. I began considering what type of job I’d ideally like, and it made me realise that I really wanted to do something that I would enjoy and be passionate about.”

Dale is currently studying Engineering at Edith Cowan University and, with the help of a note taker and additional support from his lecturers, is looking forward to this next step in his life.

“My aim is to design things for people with a physical disability, to help make their lives a bit easier. And the fact that I can test my ideas out will ensure their practicality.”

Although his life changed in that one split second, Dale has maintained a positive attitude and strongly believes in not rushing into things or pushing yourself too hard.

He maintains the best advice he can give is to get the basics right first, before even attempting to live on your own, going back to work or studying.

“It took me six years before I even started to think about work or what else I could do. Focus on being independent, like getting a taxi on your own or being able to cook or going grocery shopping.

"When you feel ready, do it then. Don’t have other people telling you when or what you should be doing – it’s your journey; you do it your way and when you’re ready.”

www.scia.org.au

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REVIEW

HAKUNA MATATA A family of zebras, seen on safari.

A hippo relaxing, seen on safari.

Words: Christine Tink

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n Swahili, hakuna matata translates as “no problems”. I recently put this easy-going philosophy to the test and what transpired was probably one of the best holidays of my life. I spent three weeks travelling through Kenya and Tanzania, experiencing an amazing culture, wonderful people and spectacular scenery. I’m certainly not saying my trip was without problems, but they paled into insignificance compared to the overall adventure.

To put everything in context, I’m a C4/C5 complete quadriplegic and this is how we did it…

With me was a carer – a qualified RN from the Philippines – and my husband, a retired military veteran. Whilst their contribution was mobility, skills and fitness, I willingly took on the role of planning and logistics.

All my initial research highlighted that safari travel necessitated minimal baggage. In some cases, for example where light aircraft travel is involved, the limit is 15kg, not including a lightweight wheelchair. Our final itinerary was largely by road, so our luggage limit was 23kg each. As anyone with a disability knows, this is nigh on impossible, but by travelling with two companions I was able to scrounge extra kilograms from their allowance.

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REVIEW The load list included: • A basic manual chair rather than my usual heavy-duty Power chair.

• A slide sheet and sling in our cabin baggage, and not a portable hoist.

• A new “Nuprodux” commode – a nifty little number that folds up into a carry-on size suitcase and weighs just 12kg.

• M y medications and supplies calculated to include exactly what I needed for four weeks on the road.* • A thin air cushion made by ROHO – perfect for me to sit on during long flights and all our hours on the road. We bought cheap polyester cushions as additional padding for the road trip at “Tuskies” – the Kenyan version of Kmart. * Don’t ask, but somehow, I ended up with only enough oral medication for one week.

Fortunately, in Kenya it really is a case of hakuna matata and no prescriptions are required. A modern pharmacy recommended by our driver magically catered for all my needs.

We flew Sydney to O.R. Tambo Airport in Johannesburg with Qantas, my preferred airline since being in a chair. That’s because they have an “Eagle-lift” hoist at Sydney and in Johannesburg.

The direct flight is roughly 14 hours, pretty much the limit of my endurance as a quadriplegic.

Other airlines we used included South African Airlines between Johannesburg and Nairobi, and Mango Airlines between Zanzibar and Johannesburg. Both are trips of approximately five hours and both airlines utilise an aisle chair and manual labour to load and unload wheelchair-using passengers.

In trying to avoid a very small Cessna Caravan flight due to luggage weight restrictions, we booked with Precision Air between Arusha and Zanzibar. It was thumbs down to them when, convinced I was sick, they refused to let me on the flight without a doctor’s certificate.

Fortunately, hakuna matata, ZanAir were far more agreeable. My carer took as much luggage as she could with Precision Air, while my husband and a few nearby volunteers manhandled me onto the smaller Cessna.

There was another blessedly hakuna matata moment on arrival in Johannesburg when my requested wheelchair-accessible transport turned out to be a very non-accessible minivan.

My slide sheet and the help of some nearby police officers was the solution to getting me into that particular vehicle seat.

As a sidenote, there are no wheelchair accessible taxis in Johannesburg but, although it was not

Top: Christine, her husband, and her carer.

Above: A leopard snoozing in its natural habitat, seen on safari.

on our itinerary, I’m told the situation is quite different in Cape Town.

I had selected our accommodation in Johannesburg on https://www.agoda.com and opted for Acacia Farm Lodge, a guesthouse 20 minutes from both the city centre and airport.

For a change, the wheelchair accessible room was one of the nicest in the house, with a large private verandah and the first of a great many mosquitonetted beds we slept in throughout our holiday.

Johannesburg’s reputation for crime was emphasised by the double sets of steel security gates at the Lodge’s entrance, and we pondered the need for both a 3m high concrete perimeter wall, topped with barbed wire, and an electric fence set 1m further in. Still, better to be safe than sorry, we thought!

Our accommodation and transport in Kenya and Tanzania were arranged by Emma Perrin, a “venture specialist” with Kerr & Downey, Cape Town. We’d liaised for several months to ensure she understood my exact requirements. The www.scia.org.au

15

REVIEW

outcome was almost perfect and, when it wasn’t, it was hakuna matata until it was. Impressively, one place even built a ramp for my wheelchair in a matter of hours.

The final leg of our itinerary ensured that I saw the home setting of one of my all-time favourite movie heroines – Karen Blixen in “Out of Africa”. We were thrilled that on safari we saw all of the “big five” (elephant, rhino, buffalo, lion and leopard), and the incredible migration of herds of wildebeest. Finally, we finished with some downtime in Zanzibar, the birth place of legendary Queen front man, Freddie Mercury.

Travelling by road in our private Landcruiser Troop Carrier meant allowances for my disability didn’t adversely affect other travellers.

Roads were largely dirt and rough but were taken slowly while game viewing, and there were only three exceptionally long days from one destination to another. Our vehicle had a seat removed for getting me in and out more easily and it also enabled me to sit in more comfort.

Our driver was an invaluable source of knowledge of local culture, wildlife and habitat; so much more of which is seen when travelling by road. We enjoyed views of village life, Masai market days, children herding goats, and zebras wandering amongst cattle. Schoolchildren make the most of the walk from school by carrying water and firewood, and we learned of the Masai male circumcision celebration when passing a village gathering. At a border crossing, I was a source of real curiosity for a man in a lovingly home-made timber wheelchair.

This trip took real commitment to organise and the expectation that things would go wrong, but we all agreed unhesitatingly we would do it again in an instant. It was the local culture and the amazing attitude of the many people we met that showed us that the true meaning of hakuna matata is making do with what’s available. And maybe that it really isn’t worth sweating the small stuff. ■

Top: Masai Market Middle: ‘Jaws Corner’ in Stonetown, Zanzibar.

Above: Zanzibar's beachfront.

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Are you ready to go back to work? Contact our friendly EmployAbility team to help you find a job that matches your skills and experience.

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

DAILY LIVING

Simple tips to make everyday life in a wheelchair easier Getting advice from people who use a wheelchair and who understand all the nuances that go with life lived as a wheelchair user can be an excellent way to find out some of the best wheelchair hacks.

Here are some really smart and useful tips from Spinal Cord Injuries Australia’s Peer Support team members:

Dan • T o free up your hands, attach a cycling cup holder to the front arm of your wheelchair. It’s a great way for carrying water or coffee.

Free up your hands with a simple cup holder.

• T o easily open leg bag tapes, I suggest attaching a key ring loop to help you.

• S owing Velcro to the inner thigh of your pants makes it easier to access the groin for self-catheters.

Jessica • Th is is a simple tip, but I order my groceries online so I can pick them up or have them delivered. It saves you from bringing a second person to push a trolley or having a heavy basket on your lap.

• A t night, I roll in backwards next to my bed just in case I wake up in the middle of the night and really need the toilet. A quick exit is always a good exit!

• I f the benches are too high in the kitchen, buy yourself a portable cook top and use it as a lower surface for easy access.

• P hone wallets are amazing. I don’t carry a standard wallet anymore, just my phone.

It’s got everything I need and it’s one less thing to carry.

• K eep your air-conditioning room temperature consistent to help maintain body temperature. I prefer 22-24 degrees because I know if I don’t, I over-heat at night and have more issues in the morning.

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Rob • T o stop you from slipping in the wet, I highly recommend crutch stoppers. I use Flexyfoot and they’re brilliant!

• H ave an attachment on your wheelchair to hold your phone, and always carry a portable charger when you’re travelling, both for your phone and Smartdrive wrist band.

• A n excellent tip for men travelling is to carry a water bottle in which you can relieve yourself if you’re caught short.

For people who catheterise often, empty your bag into a 2-litre bottle and get a carer or family member to dispose of it.

Lee • I f you enjoy swimming, get a solid plastic container from Bunnings (one that can hold your body weight) and glue a yoga mat or foam to the lid. Use this to put your swimming gear in and then as a step to transfer in and out of your chair.

• T o prevent your feet from becoming damaged when in the water, put on a pair of wet-suit booties for protection.

DAILY DAILY LIVING LIVING

Emily • I often use tea tree oil to help remove all the nasty black adhesive left behind by medication patches, stat locks, bandages and tape.

• B y attaching a four-plug extension cord to the side of your bed (I use zip ties to do this), you can easily charge phones, tablets and other items. It’s also a great way to have them close by when you’re by yourself at night and need to be able to contact people.

• I also put my lunch container in a plastic bag in the fridge with the handles pointed out so that I can easily grab it and go. This is particularly helpful when you don’t have any grip strength to lift items out.

Branca • I find placing a net under your wheelchair is super handy for carrying things and keeping items within easy reach.

• I f your balance isn’t good, or you’re pregnant in a chair, then reacher-grabbers really help with that support you’re after. ■

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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.

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.

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NSW Auditor-General’s Review and Report on NSW Transport Access Program Access to transport is critical to ensuring that people can engage in all aspects of community life, including education, employment and recreation. Yet, people with disability can often encounter barriers when accessing public transport services. Latest figures available show that in 2015 there were 1.37 million people living with disability in New South Wales.

Accessible public transport is expected to provide barrier-free access for people with physical disabilities as well as those who have vision, hearing or cognitive impairments. All users, not just people with disability, benefit from improvements to the accessibility and inclusiveness of transport services.

Transport for NSW (TfNSW), the department responsible for public transport, has an obligation under Australian Government legislation to provide non-discriminatory accessible services to people with disability.

Under the Disability Standards for Accessible Public Transport 2002 (the DSAPT – an instrument of the Disability Discrimination Act 1992 (the Act) (Commonwealth)), there’s a requirement to modify and develop new infrastructure, means of transport and services to provide access for people with disability. All public transport operators were required to ensure that at least 90 per cent of their networks met DSAPT

by December 2017 and they’ll need to be 100 per cent compliant by 31 December 2022. However, trains aren’t required to be fully compliant with the DSAPT until December 2032.

In July 2018, the Audit Office of NSW met with several disability organisations – including SCIA P&A – to gather information on issues relating to the management and implementation of accessible public transport services, facilities and infrastructure for people with disability. The Auditor-General, Margaret Crawford, subsequently decided to investigate how TfNSW managed transport, and in particular, the Transport Access Program (TAP) – TfNSW's largest program with a specific focus on improving access to public transport for people with disability. This includes

installing lifts, paths and ramps at train stations and ferry wharves, improving signage and other measures to comply with the DSAPT. TfNSW has invested $1.2 billion in the first two stages of the TAP since 2011-2012.

In February, the Auditor General’s report was released after reviewing the TAP. It included that TfNSW's process for selecting and prioritising projects for the third stage of the TAP balanced compliance with the DSAPT with broader customer outcomes. Demographics, liveability and value for money were also considered.

TfNSW has undertaken a phased approach to auditing compliance with the DSAPT across the transport networks, with a focus of first assessing compliance at locations that are not wheelchair accessible. This creates two problems. First, TfNSW doesn’t know the complete scope of work required to comply with the DSAPT. Second, not all wheelchair accessible locations fully comply with the DSAPT. TfNSW has acknowledged that it will not achieve its obligations for its public transport services to be 100 per cent compliant with the DSAPT by 2022. The audit recommended that TfNSW publish a schedule of train stations and ferry wharves it plans to upgrade, as well as improving how it measures, and publicly reports on, accessibility outcomes for people with disability. However, because TfNSW doesn’t know the complete scope of work required for full compliance, its ability to demonstrate an effective approach is limited.

Given the long timeframes associated with improving transport infrastructure, this information is important as it allows people to make informed decisions about where they live, work or study.

Coincidentally, on 1 March, the NSW Liberal Government announced it will improve access to 68 train stations, including lifts, ramps and footbridges.

The list of train stations is available at: https://nsw.liberal.org.au/Shared-Content/ News/2019/68-MORE-TRAIN-STATIONSTO-RECEIVE-ACCESS-UPGRADE The above information was sourced from the Auditor-General’s website. The AuditorGeneral's Full Report and Summary are available at: www.audit.nsw.gov.au/ourwork/reports/transport-access-program

POLICY & ADVOCACY

Squeaky Wheel

NSW Transport Disability Incentives and Subsidies

The Stand By Me rally in Martin Place, Sydney in February.

TfNSW undertook the Transport Disability Incentives and Subsidies (TDIS) review to people with disability and taxi operators with the final report expected to be released by March. The review considered if taxi transport subsidy scheme (TTSS) vouchers could be used for other services, such as Uber, to enable TTSS participants to benefit from the deregulated point to point transport industry.

However, the number of privately-owned wheelchair accessible vehicles that could be used for point to point transport could be limited as compliance with the DSAPT minimum allocated space needed for public transport for wheelchair accessible taxis doesn’t apply. The minimum allocated space requirements are a clear floor space of 1300 mm long by 800 mm wide and a minimum clear entrance and internal headroom of 1500 mm high. These dimensions are to be provided as a threedimensional space with no encroachments.

Privately-owned compliant wheelchair accessible vehicles provide the opportunity to increase accessible transport options as well as create a business opportunity for owners. They would almost certainly be welcomed in rural, regional and remote areas where there’s limited or no accessible public transport or wheelchair accessible taxis, and where such vehicles are in short supply.

Although the TDIS Report has been completed, SCIA P&A has been informed that it will not be given to the NSW Minister for Transport until after the 23 March state election. As there’s no certainty as to when the report will be released to the public, SCIA P&A lodged a Government Information (Public Access) application to obtain a copy and will report back on the outcome in the next Accord.

NDIS and Transport Allowance The rollout of the NDIS over the first five years has resulted in many eligible NDIS participants having mixed experiences when being allocated funding for supports to meet their goals and aspirations.

Many have experienced life-changing positive outcomes, but some have had a reduction or loss of supports and/or funding compared to what they received

before, including the loss of the Transport Allowance they’d been receiving as the Mobility Allowance from Centrelink – still available to people with disability ineligible for the NDIS. The Transport Allowance has three funding levels. The highest level is equal to the highest level of the Mobility Allowance, which has two funding levels.

The Mobility Allowance eligibility criteria requires people with disability to be working, studying or volunteering for a minimum of 32 hours per month (8 hours per week) and enables people to purchase vehicles, including vehicle repairs and maintenance, with GST exemption. And if a person with disability’s income and assets exceed the Disability Support Pension eligibility criteria, the Mobility Allowance also provides the Health Care Card, allowing them to obtain medication subsidised through the Pharmaceutical Benefits Scheme.

The NDIS has an important role to play in enhancing the social and economic opportunities for people with disability and the Transport Allowance can assist participants to achieve and maintain their goals. However, SCIA P&A has become aware that some NDIS participants who had received the Mobility Allowance prior to the NDIS, and been allocated Transport Allowance in their initial NDIS plan, had their Transport Allowance withdrawn after a plan review. This is due to the NDIA changing the Transport Allowance eligibility criteria as it deems NDIS www.scia.org.au 21

POLICY & ADVOCACY Squeaky Wheel

◀ continued from page 21 participants ineligible if they disclose they’re able to drive independently.

The NDIA’s position will only provide transport funding for those unable to use public transport without difficulty and who are therefore reliant on taxi services.

If an NDIS participant has a goal to seek and/or maintain employment, education, or to increase social participation and is unable to drive a vehicle, the NDIA will include Transport Allowance in the NDIS participant’s plan.

As Transport Allowance provides an incentive for people with disability to seek and/or maintain employment, SCIA P&A believes withdrawing it from participants who can drive their own vehicles acts as a disincentive.

Additionally, the NDIA doesn’t seem to consider that an NDIS participant with a physical disability – who can drive and who bears the cost of operating and maintaining a vehicle – may choose driving to get to and from work rather than taking time-consuming public transport which may involve using more than one, bus, train or ferry.

without any consideration for adverse weather conditions. The act of driving for many people with disability, particularly when needing to transport other equipment and computers etc, is integral to a person’s independence.

SCIA P&A has supported an NDIS participant through the NDIA appeals process, including going to the Administrative Appeals Tribunal (AAT), but the appeal was unsuccessful.

If you’ve experienced similar issues, please contact SCIA P&A on 1800 819 775 during business hours or email: advocacy@scia.org.au ■

There should also be consideration for those with extensive personal care requirements and the time taken to get ready in the morning to attend work or other vocational commitments. Factor in time taken on public transport and this adds significantly to the length of the day,

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REGIONAL ROUND UP

Our regional team

South Coast

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.

After almost three decades of advocating to make Unanderra train station accessible, locals and community members are celebrating a big win. Both Labor and Liberal parties have promised funding to install lifts, with Labor promising $25 million and the Liberals $20 million for the upgrade. This is a huge and longoverdue victory for local residents

Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au Vicki Gow & Catherine Rae New England 20 Murray Street, Tamworth NSW 2340 T: 02 6766 6422 0413 367 520 (Vicki) 0427 257 471 (Catherine) E: ndisne@scia.org.au Nicole Mathias & Doug Hollingworth Northern Rivers Shop 27 Alstonville Plaza Main Street, Alstonville NSW 2477 T: 02 6766 6422 E: northernrivers@scia.org.au

The announcement comes four years after outrage following the release of shocking video footage showing a double amputee crawling up the station stairs.

The Unanderra Access group have worked tirelessly to make the station accessible for all and the upgrade will not only benefit people with disabilities,

Artist's impression of the new lifts at Unanderra railway station.

but the elderly, people with prams, luggage or bikes.

Community members and other stakeholders will have the opportunity to provide feedback on proposed designs for Unanderra as part of the planning approval process.

Northern Rivers SCIA’s Northern Rivers office recently merged with Ability Advocacy (AA), increasing support to people with all types of disability, and assisting them to achieve a quality of life equal to the rest of the community. Following are two recent success stories.

Our office was asked by a client to assist with an NDIS application. Despite making several attempts to apply herself, the client had been rejected due to a lack of medical evidence regarding her functionality. The Northern Rivers advocate contacted Legal Aid, who assisted with presenting the matter to AA, who sourced an occupational therapist to provide a correctly-worded

client report outlining the impact of the her post-polio syndrome.

Together with reports from other specialists, the NDIS eventually accepted the client’s admission to the scheme.

In another case, a long-term social housing client had new neighbours who were demonstrating anti-social behaviour, causing her extreme anguish. She approached the Northern Rivers office for support to lodge a transfer application with FACS Housing Department. After many discussions and representations to the appropriate minister, more suitable social housing was found.

Central West

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SCIA wishes to advise that the regional office in Mudgee has been permanently closed, as of 14 March. A change in funding model and a lack of NDIS demand in this area resulted in the financial unsustainability of this office.

We are extremely grateful to Mr Craig Lees for his dedicated service and wish him well.

support them during this transitional period. We will also be providing various means of assistance to the Plan Management team.

Our foremost concern is to assure our clients that SCIA will continue to

For further information or support, please contact SCIA on 1800 819 775.

We would like to reassure our members that this is an isolated case, and that no other regional offices will be affected.

New England The New England office currently supports 50 clients, providing vital assistance with NDIS Plan Management and offering invaluable Support Coordination, ensuring individuals receive the best possible outcomes of their plans.

Catherine and Vicki, who manage the New England office, are now taking on new clients, and are available to travel to meet people in all surrounding areas, or provide NDIS plan assistance over the phone.

The dynamic duo are also rolling out supports to people over 65 in receipt of a Commonwealth Home Support Program (CHSP) Package and will soon be providing Individual Social Support Programs. Make sure to give Catherine or Vicki a call if you’d like to receive further information about either of these new initiatives.

Updated email address for New England is: ndisne@scia.org.au

Upcoming Events: • W heelchair Rugby League NSW will be holding their Country City Representative fixture and schools clinic Program in the Hunter Region from 2326 May. For more information visit www.wrlaustralia.com.au • W heels & Walkers Family Sports Group is an organisation run by volunteers and parents and includes an accessible sports program. It’s held at Tamworth Sports Dome, Jack Smyth Drive, on Tuesdays during school terms, from 4.45pm – 5.45pm.

• I llegal Lengths Hairdressing in Tamworth is providing a “sensory friendly” day on the first Monday of each month from 9.00am – 11.00am.

With reduced noise and lighting, there are no rules; simply sit on the floor, stand or move around and staff will cater for your individual needs. Bookings essential. Please call (02) 6766 5534.

Enabling life’s journey • Passenger and driver configurations available • Vehicles tailored to meet your specific needs • Conversions exceed Australian Standards • Exceptional ride comfort and visibility for all occupants • Authorised service centres Australia wide

Call 1300 660 773 to schedule your free demonstration

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NDIS

SCIA helps make securing NDIS funding easier A

shna Manon acquired her spinal cord injury following a car crash over 20 years ago, which severely affected her mobility and range of motion through her lumbar and cervical spine.

Introducing

GentleCath™ Glide... designed to make catheterisation as simple and convenient as possible.

After her own attempts to seek government funding proved increasingly frustrating, Ashna approached Spinal Cord Injuries Australia (SCIA) for help in securing finance for equipment and much needed home modifications through her NDIS Plan.

SCIA Community Services Coordinator, Vincencia Mensah, has been working closely with Ashna over the last year, assisting her through the review process and an application for further funding.

Identifying a need for specialists’ documentation, Vincencia first arranged for an occupational therapist and exercise physiotherapist to visit Ashna. Working closely together, they identified the equipment and home modifications which would best suit Ashna and enable her to remain independent at home.

A smooth, slippery, hydrophilic catheter ...ready to use as soon as it’s wet ...with a contamination prevention sleeve1,2 ...and FeelCleanTM Technology, designed for less messy catheterisation

“Supporting Ashna through this entire process has been really positive, from requesting a review of her plan to getting together the information from specialists. Our extensive experience of working with the NDIS means we know the processes to follow, and I was so pleased we were successful in securing this important funding for her,” says Vincencia.

“Helping Ashna navigate through the NDIS system has been rewarding for me. I find joy in knowing that my clients’ needs are met and that I can assist them achieve their goals.

“The NDIS world can be confusing and hard to push through at times,” continues Vincencia. “The processes have changed considerably over the past couple of years, making it difficult to get some supports funded. But I love helping my clients to overcome those challenges and make the most of their plans by getting the funding they need; I know I’m making a positive difference in their lives.”

SCIA has friendly, specialist staff who can help you navigate every aspect of your NDIS plan. For further information or support contact us at 1800 819 775 or email info@scia.org.au. ■

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1800 339 412 www.gentlecath.com Designed for fast* and convenient catheterisation * No additional waiting time once the catheter has been wet References: 1. Hudson E. & Murahata R.I. The ‘no-touch’ method of intermittent urinary catheter insertion: can it reduce the risk of bacteria entering the bladder? Spinal Cord 2005;43(10):611–614. 2. Charbonneau-Smith R. No-touch catheterisation and infection rates in a select spinal cord injured population. Rehabilitation Nursing 1993;18(5):296–299, 305. ©2019 ConvaTec Inc. ®/ TM indicates a trade mark of a ConvaTec group company. AP-018167-MM CCC286 ConvaTec (Australia) Pty Limited. ABN 70 131 232 570. PO Box 63, Mulgrave, VIC 3170. Phone: (03) 9239 2700 Facsimile: (03) 9239 2742. www.convatec.com.au

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Spacious and beautifully appointed apartments feature modern amenities and advanced home automation technology to deliver a stress-free experience. A wide range of accessible recreation/ leisure activities and a state-of-the-art gym complete the resort experience and put the fun back into travel. For those looking for an accessible holiday or short-term accommodation and assistance - Sargood is the perfect choice. *Sargood is open to all with permanent spinal cord damage that is not progressive or palliative.

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TECHNOLOGY Graeme Smith, Ability Technology

Laptop or tablet for home control?

I have an iPad and I am struggling to type accurately, as the keyboard keys are very small. I do not have much strength in my fingers, and this makes typing difficult. Also, is there any way to make the icons bigger on the iPad, as this would make it easier to get to them.

There are a few things you can try. First, you could try a stylus, such as the Steady Stylus (pictured right) or Caduceus.

Some very inexpensive pen-style styluses might help, or even the Apple Pencil (if you have a compatible iPad model). Second, you can try some of the Touch Accommodations available in the Accessibility section of the iPad settings.

These can be very useful, and can, for example, change the timing so repeat keystrokes are ignored, or select only the first or last item you touch, rather than the unwanted touches in between.

Another option is to use a third party keyboard which can be installed on the iPad. Two of my favourites are the Keeble (see picture) and the Superkeys. These may make it easier to type, whether you are using your finger or a stylus. They include word prediction and optional text-to-speech.

Finally, you could try an external keyboard.

They can be Bluetooth, or else you can connect a USB keyboard through the Apple Camera Connection Kit. I’m not sure these would benefit you, in view of your limited strength, but perhaps would work well with a stylus. Beyond this, we would be looking at the J-Pad joystick or switch access.

You ask whether larger icons are available for the iPad. You could use the Zoom feature, in the Accessibility options; it can be set to enlarge the entire screen (but you need three fingers to drag to different parts of the screen). The text size can be increased under Display & Brightness settings. There is an app called Launch Center that attempts to provide a grid of enlarged icons to control apps and certain actions on the iPad. It may be helpful in providing one-click access to your usual functions. Not all apps are compatible with this, however.

Google Home, Alex and Siri Is it possible to control one’s home environment using one of these inexpensive voice control options (Google Home, Amazon Alexa, and Siri)? Will they provide a complete solution for a person with a disability who spends most of the day in bed?

This is a big question. We welcome the emergence of these mainstream devices, as they fill a major void for voicecontrolled ECU options. They work well, within their own parameters. They can provide inexpensive options for those whose needs match what these systems provide. There are some limits however, and people should be mindful of.

Additional devices are required to bridge the gap, one of the main ones being Logitech Harmony. This can be tricky to set up. They also have limitations when controlling air conditioners, doors, beds, intercoms and other appliances. Again, other devices will most likely be needed to supplement the voice control system.

First, they are internet based. If your internet fails, then so does your capacity to control your home devices. This problem can be minimised by the use of routers with 4G backup, assuming you are in mobile range. But a change of password, or a new ISP, can throw the system into disarray. Having a dedicated network, such as Google WiFi, with its own secure password, can by-pass such problems.

The third issue that arises is reliance on voice control alone. We normally don’t recommend this, as voice control can be unreliable, particularly if the user has a cold or hoarseness for any reason, or an uneven temperament (that might incline them to shout commands, further reducing clarity). This means the user should be provided with another means of control (such as direct selection or switch access) apart from voice.

Second, these systems do not control infrared devices (such as some TVs, music systems, DVD players, Foxtel, etc).

The end result is most likely that that you will require a more complex system than first envisaged with one of the voice

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boxes. They have their place, and they are welcome indeed given the paucity of voice control options that existed previously, but they are unlikely to be a complete solution.

TECHNOLOGY

Product news TAP Wearable Keyboard Do most computer functions by moving your fingers. https://www.tapwithus.com Create music simply by moving any part of your body! Invisible Keys from Technical Solutions does just that. Just connect it to a synthesiser or an iPad or Mac using GarageBand and a MIDI to USB adapter. https://tinyurl. com/y3jochnf Apple TV Accessibility Apple TV comes with accessibility features for vision impaired (audio descriptions, Voiceover, colour filters, contrast settings zoom, Siri commands, Bluetooth keyboard compatibility, Braille display compatibility), hearing impaired (closed captions) and physical disabilities (switch control, Bluetooth keyboard compatibility, Siri commands, dictation, remote touch sensitivity settings).

Tecla-e is an assistive device that gives people with upper body mobility impairment the ability to fully access smart devices and mainstream technology.

Users can control multiple devices to send and receive emails and text messages, browse the web, watch videos, launch and use apps, read books, implement home automation, make phone calls, and enter commands using Siri. Tecla-e connects to ability switches or wheelchair controls and allows individuals to interact with their smartphones, tablets, computers and internet-enabled appliances hands-free.

This includes iPhone, iPad, iPod Touch, Android smartphones and tablets, Mac and Windows computers and Apple TV. It works with all adaptive switches on the market including buttons, sip-and-puff controllers, head arrays and joysticks.

Users can interact with and switch between up to eight devices.

Are you seeking an experienced provider who understands complex health supports?

Greystanes has 60 years experience

Above: Tecla-e Below: TAP Wearable Keyboard

For further information on any technology featured, contact the Ability Technology team at info@ability.org.au

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Flexible home and social support 24/7 supported accommodation Empathetic well trained staff Mobile Nursing team

CALL 02 4784 1118

Registered NDIS Provider

2 Grose Street Leura NSW 2780 | enquiries@greystanes.org.au

www.greystanes.org.au

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INFORMATION AND RESOURCES Tying the Ribbon: How I Survived a Spinal Cord Stroke at Twelve Years Old - And My Life After by Haley M Stark Haley is a sixteen year old high school student who experienced a life-threatening spinal cord stroke. Written as a diary to log her experiences, Tying the Ribbon is the honest, personal, and unapologetic story from her perspective. Sarcastic, serious, and sometimes brutally truthful, this book is an absolute necessity for anyone facing health-related challenges.

Borrow from the SCIA library or visit: www.amazon.com

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Stepping Up: Witty, Poignant, and Inspirational Stories about a Physically Challenged Life by by Joseph S. Groh and others This insightful collection of essays shares firsthand accounts of people living with lifealtering disabilities. Author Joseph S. Groh shares his journey after a spinal cord injury changed his life, inviting you to learn about the incredible, poignant, and just plain funny experiences from life as a quadriplegic. These stories are all based in reality, and offer an inspirational look at life.

Borrow from the SCIA library or visit: www.amazon.com Strangers Assume My Girlfriend Is My Nurse by Shane Burcaw With his signature acerbic wit and hilarious voice, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humour and grace.

Borrow from the SCIA library or visit: www.amazon.com Squeaky Wheels: Travels with My Daughter by Train, Plane, Metro, Tuk-tuk and Wheelchair by Suzanne Kamata A mother-daughter travel memoir woven with comparative culture and accessibility awareness. Kamata’s adventures with her teen—who happens to be deaf, with cerebral palsy, and in a wheelchair—through subterranean Tennessee, to the islands of Japan, and to the top of the Eiffel Tower ultimately lead to a daughter’s increasing independence, a mother letting go of expectations, and advocacy for travel which prohibits discrimination.

Borrow from the SCIA library or visit: www.amazon.com The Spirit in the Sky: A Memoir. A fall of Icarus...the rise of Phoenix...an Odyssey of the Soul by Chris Sheridan After surviving a plane crash and adjusting to life in a wheelchair, Chris Sheridan never revealed what exactly happened in the cockpit that day...until now. Follow along on an epic journey of ups and downs, twists and turns until coming full circle and face to face with The Spirit in the Sky. Borrow from the SCIA library or visit: www.amazon.com

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.

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IMAGINE A WHEELCHAIR BUILT JUST FOR YOU. Not just one or two adjustments. But every single component, selected, measured, cut and assembled to fit you. That’s the idea behind TiLite. From the lightest, strongest metals around. Permobil manual wheelchairs are Stronger. Lighter. More comfortable. Easier to push. Easier to stop. Easier to load. Easier to store. Made for You.

www.permobil.com.au

CALENDAR

Events INDUSTRY MAY

JULY

8-9 May

10-12 July

ATSA Independent Living Expo, Sydney Sydney Olympic Park, Sydney NSW

Occupational Therapy Australia 28th National Conference and Exhibition 2019 International Convention Centre, Sydney NSW

www.atsaindependentlivingexpo.com.au

www.otaus2019.com.au 15-16 May ATSA Independent Living Expo, Brisbane Royal ICC, Brisbane QLD www.atsaindependentlivingexpo.com.au

JUNE 7-8 June Gold Coast Disability Expo Gold Coast Event Centre, Bundall QLD

AUG 21-23 August ANZSCoS Annual Scientific Meeting Pullman Melbourne Albert Park, Melbourne VIC www.dcconferences.com.au/anzscos2019/

26-29 August

www.goldcoastdisabilityexpo.com.au

i-Create 2019 Conference National Convention Centre, Canberra ACT

13-14 June

www.icreate2019.org

Spinal Injury Nurses Association Annual Conference Griffith University Southbank Campus, 226 Gray St, South Bank, Brisbane QLD http://bit.ly/2uXU4gO

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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