Accord - Summer 2015

Summer 2015

SAY IT LOUD, SAY IT CLEAR Taxi subsidy advocates take to the streets

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From the CEO From the President Letters to the Editor News Technology Hot Topic

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Workforce In Practice

Featured

Daily Living Travel Information and Resources Goods and Services

10 Say it loud, say it clear What we really think of the taxi subsidy

14 One step closer to home

Events Policy and Advocacy Regional Round Up

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: office@scia.org.au Website: www.scia.org.au

Editor Helen Borger Designer Shauna Milani Advertising accordadvertising@scia.org.au

Printer: JA Wales Pty Ltd ISSN 1448-4145 The opinions expressed in Accord are not necessarily those of Spinal Cord Injuries Australia 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

PETER PERRY

POSITIVE CHANGE COMING over the horizon As 2014 has drawn to a close, what have we learned during the past year and what can we expect in the future?

I would have to say that the major learning from last year was that the National Disability Insurance Scheme (NDIS) is here to stay. I think the fact that the NDIS obviously has such strong bipartisan political support indicates that it is an idea whose time has come and now has almost unstoppable momentum.

That is not to say that the rollout of the NDIS won’t be without its challenges.

For our members, there will be a major adjustment to make in a new world characterised by more choice and more control. This will ultimately be a positive for most, if not all. But as with any change, it will need a new way of thinking for many and new approaches to life. For our organisation, we will need to carefully manage a transition from a largely government-funded provider of resources to an organisation offering services that people find valuable and will want to purchase.

The other change the NDIS will bring for our organisation will be in our advocacy activities, which are at the core of the organisation’s history and purpose.

Soon to be gone are the days when most people with a disability have to struggle just to be recognised and taken seriously; the NDIS will lead our society down a path where these old struggles will be largely irrelevant. So what are the new battles that need to be fought? In my view, the most pressing advocacy issue for the next few years will be to make sure we get the implementation of the NDIS right.

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As I have expressed on numerous occasions, any public policy initiative is in its most fragile state while it’s being piloted and tested, and the NDIS is no different.

Public goodwill and opinion can be fickle. It will not take many negative stories about the NDIS to start to turn public opinion, which will have an impact on, to use a Sir Humphrey term, how “brave” the government of the day will be in its support for the scheme. One only has to look at the demonisation of asylum seekers to see how one group can be singled out and sacrificed in the quest for political advantage. We must ensure that the original vision for the NDIS is not lost.

Soon to be gone are the days when most people with a disability have to struggle just to be recognised.

The other significant piece of advocacy that will be required is to ensure that the scheme meets the needs of the people, rather than the other way around. In NSW, there has often been an element of people having to fit in with the strict requirements of the Lifetime Care and Support Scheme, which has resulted in some quite silly bureaucratic decisions – although this seems to be changing for the better in recent times. If the NDIS is really all about choice and control, then those responsible for the scheme need to genuinely engage with people on their terms and invest in their futures, not contain costs in the short term; hopefully, this is one lesson that everyone has learned in the last year. ▪

TONY VARRALL FROM THE PRESIDENT

NEW ERA IN SERVICE PROVISION is almost upon us

More changes are afoot with the announcement last September that the Home Care Service of NSW will be privatised by the middle of next year.

It has been known for some time that the NSW government will be pulling out of disability services. At the end of 2012, it signed the Heads of Agreement with the Commonwealth to implement the National Disability Insurance Scheme (NDIS) in the state by 2018-2019. The transition of Home Care to the non-government sector is another step in this process.

All staff and clients were informed of the change by the Minister for Disability Services, John Ajaka, and the Secretary of Family and Community Services, Michael Coutts-Trotter. It is hoped there will be little disruption for clients and staff with the move across to the new owner.

There is no information yet on who the owner will be; however, considering the size of Home Care – with branches across the state and being the sole provider in some regional areas – it will be a massive undertaking.

On 21 October, a rally and forum took place at New South Wales Parliament to highlight the need to increase the Taxi Transport Subsidy Scheme (TTSS). The TTSS has remained unchanged since 1999 (for more details, see the article on page 10 and discussion on page 28). Our Policy and Advocacy team and others have lobbied significantly over the past two years for an increase in the subsidy cap.

Speaking of lobbying and campaigning, it is worth highlighting the steps individuals can take to pursue change.

Writing a letter to your local state and federal member is often a starting point.

If the concern relates to disability and spinal cord injury then it is beneficial to raise it with the member of parliament who holds the relevant portfolio, such as the NSW Minister for Disability Services and/ or the Federal Minister for Social Services.

You might want to find out if your local council has an access committee you can join.

Also, state and federal government inquiries take place to investigate concerns about government services (such as unmet need), proposed laws and other issues.

Parliamentary committees are formed and made up of members of parliament, who examine policy and government administration, such as the recent federal inquiries into housing affordability and the NDIS. Committees provide an opportunity for individuals to participate in public hearings and write submissions.

You will find good information about committees on the NSW Parliament website (www.parliament.nsw.gov.au) or Federal Parliament website (www.aph.gov.au).

Also, if you want to contribute to positive outcomes in your local area, you might want to find out if your local council has an Access Committee you can join.

Finally, I would like to congratulate Joan Hume on her appointment as President of SCIA following our recent elections. I would like to thank all of our members who have supported me over the last three years and wish you all a very Merry Christmas and a Happy New Year. ▪ www.scia.org.au 3

LETTERS TO THE EDITOR

Pause for thought I would like to express to SCIA my gratitude for all the help and support I’ve received from the many members of its staff over the years. When I look back, SCIA always seems to have had the right staff in the right jobs.

getting my photo taken that I realised what a remarkable person Lee was and the enormous help I have received from SCIA. I wouldn’t be in this beautiful home unit if it wasn’t for another SCIA worker, Michael Magro, fighting for me. He didn’t give up either and for that I am grateful. I have also received financial help from SCIA to buy things I have needed.

too, and multiple newspaper pictures and stories, a press release and letters galore from fuel giants. One oil company wrote to me saying that my local branch did have a sign telling times and days when service was available for disabled drivers.

But no sign existed.

Thanks for nothing to all you miserable ones involved. If you read this you will It was only recently when I was involved know who you are.

The kindness, encouragement and support in the ‘Imagine Me’ photography project I have received from the staff members that I came to understand the impact that I now have to phone up my local outlet of SCIA is something that I will never SCIA has had on my life. to find out when they have two people forget. You have given me my life back. on – and then I can drive down and they When I was first diagnosed with spinal You have helped me to dig deep to find fill my car for me. But this is no advance arteriovenous malformations (AVMs), the courage and resilience to take another in 12 years.

I couldn’t take two steps without falling step forward. For all of this I am grateful. down and I had lost control of my bowel Thank you for being there for me when no I hope that the ‘non-helpers’ in this matter and bladder. But it only took one phone never get stuck in a wheelchair and have one else was. call to SCIA and Paige Ridgeway was to put up with what I have to put up with.

Heather Lofts, there to help me out. She fought for me SCIA member Cool note: One attendant once closed up and worked with me to get the treatment Ballina, New South Wales the shop, filled my car, took my money I needed. We found Professor Michael and opened the door while two customers Morgan, a cerebrovascular neurosurgeon waited – without complaint. Only took in Sydney, to remove the AVMs. When three to five minutes. I have waited in I flew down to Sydney for the operation, supermarket queues longer than that.

Paige had also organised for another SCIA I live alone and use a wheelchair, and in staff member to meet me at the airport.

2002 I began trying to get my car fuelled Peter JB Harris, Volunteer I would never have made it to the up without discrimination, i.e., help and Disabled Access Activist appointments or hospital without at the fuel outlet: like a sign telling me Western Australia this help. It saved my life. which days and the times I can have my car fuelled up with the assistance of an That was nine years ago. Now Lee Clark attendant.

Accord welcomes letters to the editor. goes way above and beyond her duty to help me. The first time I attended the If you are like me and need help fuelling Email your contribution to ‘Imagine Me’ project, I only lasted one up your car, what do you do? I tried accordeditor@scia.org.au morning. I was exhausted and in a lot bureaucrats, ‘pollies’, fuel companies, to be considered for publication. of pain, but it was no excuse for my bad lawyers, motoring groups and the groups attitude. In true Lee style, she didn’t give set aside to resolve such matters of All contributions are edited and Accord up on me and talked me into going back. discrimination. All to no avail. I have a reserves the right not to publish any I was glad I did because it was while I was two-inch (50mm) thick file to prove it all, contribution.

Fuel in your car

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NEWS

Imagine Me The creativity of SCIA members featured prominently at the Imagine Me Project Exhibition and Film Launch at Royal Rehabilitation Centre, Sydney, on International Day of People with Disability.

Imagine Me is a photography project for people with spinal cord injury run by professional photographer and artist Sue Murray. Sue collaborates with people with spinal cord injury (SCI) to create artworks that explore their experiences of SCI. The project is supported by the Australia Council Community Partnerships Project Grant, Delineate grant (an initiative of Accessible Arts in partnership with the Don’t DIS my ABILITY campaign sponsored by the NSW Government, Department of Family & Community Services), City of Sydney Local Community Grant and the Spinal Cord Injury Network matching grant.

Simon Hodsden, one of the SCIA members who participated in the program, features in the exhibition and

Vale Stella Young

film and spoke at the launch. “You can be creative…You can go out and find something you didn’t know you had,” Simon says in the film.

“The participants really put their heart and soul into their photographs and accompanying words. They then put it out there for everyone to see,” says Leah Ogden, SCIA Regional Officer, Illawarra.

The participants put their heart and soul into their photographs [and] put it out there for everyone to see.

Leah also praised Sue’s work. “The project was Sue’s idea. As a result of the project, some of the participants expressed a keen interest in purchasing adaptive equipment so that they can continue on with photography.”

To see the Imagine Me gallery, visit www.imagineme.com.au

Stop the violence

Stella Young

Women with disabilities experience more violence than the general population, says Women with Disabilities Australia (WWDA).

Tributes poured in following the death of journalist, comedian and disability activist Stella Young late last year.

Stella died unexpectedly at her home in Melbourne on 6 December.

“Women with disabilities are 40 per cent more likely to be the victims of domestic violence than women without disabilities,” according to a WWDA fact sheet prepared for a November 2014 United Nations committee.

She pulled no punches when advocating for people with disability. “I guess I like to challenge what people think they know about disability,” she told Sheilas, a publication of the Victorian Women’s Trust, earlier last year.

“People take one look at me and think they know things about my life based on stereotypes – they might assume I don’t have a partner, or a job. They might think I don’t live independently, or stay out late, or dance until the wee small hours of the morning.”

Saddened to hear of Stella’s death, Susan Ryan AO, Disability Discrimination Commissioner at the Australian Human Rights Commission (AHRC), said, “Stella challenged misconceptions about disability in everything she did – whether it be in her role as a writer, disability advocate or comedian.”

Emily James

Photography by James Penlidis

Elizabeth Broderick, Sex Discrimination Commissioner at the AHRC, also paid tribute to Stella.

“Stella did enormously important work to advance the rights of women with disability.”

Mitch Fifield, Federal Assistant Minister for Social Services, said Stella “used a combination of charm and humour to highlight patronising and negative attitudes that people with disability have put up with for too long.”

“…and more than 70 per cent of women with disabilities have been victims of violent sexual encounters at some time in their lives.”

WWDA says women and girls with disabilities are also less likely to be believed when reporting sexual assaults.

To help address the problem of violence against women, WWDA would like to see the Australian Government investigate the possibility of implementing violence against women legislation.

Such legislation should provide “a coordinated, victim-centred approach to combating all forms of violence against women,” WWDA added. www.scia.org.au 5

NEWS

The numbers don’t lie Employers around Australia are being urged to do more to employ people with a disability.

“While there are a number of disabilityconfident employers, including Westpac and ANZ, the reality is that 45 per cent of Australians with disability live near or below the poverty line, which is unacceptable,” said Susan Ryan AO, Disability Discrimination Commissioner, Australian Human Rights Commission, on International Day of People with Disability. “…The advantages of employment stretch far beyond financial security, important as this is. Working provides a social

Correction and apology

In the spring 2014 edition of Accord, the story ‘Generosity Plus’ incorrectly referred to Peter Farrell as “John”. SCIA apologises for this error. ■

90 years young In the workforce

54%

84%

of people with disability

of people without disability

connection, a sense of purpose, and the ability to gain respect.”

Susan highlighted that “employees with disability have fewer workplace accidents, make fewer workers compensation claims, take fewer days off and typically remain with a company for a longer period of time than employees without disability”.

Nevertheless, only 54 per cent of people with a disability work compared to 84 per cent of Australians without disability, she said.

The National Disability Insurance Scheme will help workforce participation, but it alone is not enough, she added.

Roy Stone (centre) and his local Access Committee celebrating his 90th birthday

Happy birthday to SCIA member Roy Stone who turned 90 last October. Roy celebrated this great milestone with friends and family at his local bowls club and a party at the meeting of the Clarence River Maclean Shire Access Committee on the north coast of New South Wales.

Over the years, Roy has worked with many committees for the benefit of people with spinal cord injury and other disabilities.

He has spent four decades in a wheelchair, following a car accident in July 1975, in which he sustained C3/C4 quadriplegia.

Thanks to members like you, SCIA has been able to do things like provide ongoing peer support to newly injured people, secure a permanent home for the CHOICES program and hold the second SCIA Independence Expo.

Renew your membership for 2015 – 2016 and continue to benefit from services such as our grant scheme, employment support, exercise therapy and accessible accommodation.

Visit www.scia.org.au/membership

Renew your membership with us today Photography by Appleart

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www.scia.org.au | 1800 819 775 22/01/2015 10:04:01 AM

NEWS

Spinal research breakthrough Sue O’Reilly

Professor Geoff Raisman and the stem cell treatment techniques he has been doggedly developing for the past halfcentury made international headlines last year.

A Polish man whose spinal cord was completely severed in a knife attack four years ago – apparently leaving him reliant on a wheelchair for life – is now able to walk short distances, following the injection of nerve cells from the patient’s own nose into his spinal cord, above and below the point at which it was severed.

Geoff, from University College London, led the surgical team involved. The technique used on the Polish patient was essentially the same one he first began testing at Oxford University: using nasal stem cells to prompt severed spinal nerves to repair themselves. It thereby confirmed what he and other leading

researchers such as Australia’s Professor Alan Mackay-Sim first established using rats: the human nervous system, no matter how severely damaged, can be repaired by harnessing the natural power of neuroplasticity.

Sing for Spinal Cord Injury SCIA staff: Robert Wynn, Heidz Haydon, Claire Moylan and Daniel Holt; and musician Jae Haydon.

“Everyone said I was wasting my time … But what is life without hope?”

But this went against medical orthodoxy, and long-time pioneers in the field like Geoff know all about the risks involved in taking on such orthodoxy. Speaking in London several years ago in an interview for a British newspaper about his work, Geoff was scathing about the deep reluctance, if not near-complete inability, of the medical establishment to open-mindedly consider newly emerging scientific evidence challenging their profession’s dogma, assumptions and beliefs. continued on page 36

SCIA members – come along to Waratahs matches in 2015

Thirty songs in 30 days has boosted SCIA’s coffers during September.

Heidz Haydon, who has paraplegia and is a SCIA Peer Support Officer, and her brother Jae organised Sing for Spinal Cord Injury which raised $2,635.

Jae and his friend Billy Demos each played and uploaded 30 acoustic song videos to Facebook and YouTube over 30 days. They covered music from the Foo Fighters, Fleetwood Mac, the Beatles, Pearl Jam and many other artists. They also played original tunes, including Jae’s “Oh Pooey” and Billy’s “City”. The more they played, the more money they raised.

2014 is the second year of running Sing for Spinal Cord Injury. “We plan to make it an annual gig…,” says Jae. “Having Billy on board this year was good fun and a fantastic addition as we used to play together in a band in Wollongong…”

Thanks to the NSW Waratahs, five double passes are available for people using a wheelchair plus a friend, family member or carer.

You’ll be seated in the Gold wheelchair section at Allianz Stadium and have access to the members bar before and after the match.

SCIA can also provide limited funding to help you travel to the game.

To book your pass, contact Lumi Tan membership@scia.org.au or 1800 819 775.

Waratahs v Western Force Sunday 15 February, 4pm Waratahs v Brumbies Sunday 22 March, 4pm Waratahs v Blues Saturday 28 March, 7.30pm Waratahs v Stormers Saturday 11 April, 7.30pm Waratahs v The Sharks Saturday 16 May, 7.30pm Waratahs v Reds Saturday 13 June, 7.30pm

Heidz says she is proud of Jae and Billy for raising the money this year. “They put so much hard work and effort in and I am glad to see it didn’t go unnoticed. I used to attend every gig that their band Lost in Line played in Wollongong back in the day, and to see them reunite for such a good cause was just amazing,” she says.

“I cannot thank Jae and Billy enough for their contributions, not only did they participate in Sing for Spinal Cord Injury but [they also alternate] twice a month for our in-house entertainment, called Jesters, in the Prince of Wales Spinal Ward and Royal Rehab in Sydney, [which] means that people get to break up the monotony of rehab and relax for a day.”

For more details on Sing for Spinal Cord Injury, contact Heidz Haydon at hhaydon@scia.org.au or phone 0488 222 574. www.scia.org.au 7

TECHNOLOGY Graeme Smith, Ability Technology

Small joystick

Mouth joysticks

I would like to use a joystick to replace the mouse on my computer. I tried a Traxsys joystick but found it too big and it was hard for me to lift my hand to control it?

I need to use a mouth device to control my computer. I have tried the QuadJoy, but I find it hard to sip and puff through the tube, and it requires a fair bit of face movement to move the joystick; I also tend to move it when I am sipping or puffing.

Are there alternatives?

You might try the Point-It joystick.

A Bluetooth version is available; however, it is expensive ($1,619).

Also, the Optima joystick is a bit smaller than the Traxsys.

It is PC and Mac compatible.

Both joysticks have sockets, so a switch can be plugged in to replace the left and right click functions.

Alternative to X-10 I have been using X-10 for quite a while but have recently found it to be unreliable. I know there are expensive systems like C-BUS available, but I just want to control the TV, some lights and a fan. I use a Sicare Senior Pilot remote with a switch.

One option for you to consider is the Insteon system, now available in Australia. Like X-10 it uses powerlines, but in conjunction with RF wireless technology – what they call “dual mesh”. It is much faster than X-10 (by x 48) and commands are acknowledged. All Insteon devices are peers, so each extra device on the network strengthens the overall signal (whereas extra devices weaken an X-10 signal). Modules for appliances and lights are lowcost (around $69). You will need an infrared interface, which costs around $165.

There are at least two other joystick mouse devices you might consider. The first is the QuadMouse, which is two joysticks close together. Only a small amount of movement is needed – 6.35 mm. It has a standard USB connection and does not require drivers. It costs around $1,000 purchased and shipped from the US. The second option is called the LipStick. To activate a click you simply lift your upper lip slightly. Windows software is provided. The settings are stored in the device, can be customised and apply to whatever computer is subsequently used. The unit is compact and much smaller than the QuadMouse. It will sell in Australia for around $1,600.

Technology n

means

Independence

n

Productivity

n

Connection

Where do you start?

Pointers for iPad I have some difficulty using an iPad with my fingers. I tried a small pen device but wasn’t able to hold it properly. Are there other options available for controlling my iPad? There are lots of stylus options for the iPad (or any other tablet). A good source is www.etsy.com/au/ listing/67270402/steady-stylus-3-options, where you will find, among many options, the Finger Stylus, Mouthstick Stylus, Strap Stylus and Head Pointer Stylus. You might also consider a joystick device such as the J-Pad. This is a Bluetooth joystick that works through VoiceOver on the iPad. But keep in mind there is no USB port on the iPad and no cursor to control, so joystick control is not as direct as it is on an Android device.

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

HOT TOPIC Want to be in the driver’s seat?

I want to learn to drive. What do I have to do to get my licence as a person with a disability? Also, how do I go about getting a modified vehicle? Is there any financial help for this?

In NSW, Roads and Maritime Services (RMS) requires drivers who sustain a disability or have a medical condition that may affect their ability to drive safely to notify them as soon as possible.

The process in NSW for a person with a disability who does not yet have a licence and wishes to drive is: 1. C omplete an application for a learner’s permit. They ask whether you have a disability or a medical condition that may affect your ability to drive; 2. Do the Driver Knowledge Test; 3. An off- and on-road driving assessment by a driver trained Occupational Therapist may be required. The need for any vehicle modification that may be needed is assessed; 4. Learn to drive a suitably modified vehicle; 5. Do a Driving Ability Road Test with a RMS assessor in a suitably modified vehicle; and 6. When you pass, your P licence will be endorsed to show what modifications you must use when you drive.

A major issue for learner drivers with disabilities is the cost of lessons. Learner drivers under the age of 25 have to acquire 120 hours of driving experience before they can take the Driving Ability Road Test. Drivers with disabilities who need vehicle modifications and don’t have their own vehicle must use driving schools that have modified vehicles. The cost of 120 hours of lessons is exorbitant.

There are very few production vehicles made for people with disabilities. In most cases, standard production vehicles are specially modified to cater for drivers and passengers with disabilities. Modifications can range from a simple addition of a steering wheel spinner knob to major modifications to the vehicle body structure, such as extending the body length and altering the roof of the vehicle.

The RMS’s publication Vehicles Modified for People with Disabilities is the first stop for people when they consider modifying a vehicle. It outlines the regulations relating to licensing and the standards and procedures to follow to make sure the vehicle is safe (and legal) on the road.

There is no NSW state government assistance with the cost of modifying a vehicle*. Federally, for people whose employment requires driving, JobAccess will fund part or all of the modifications depending on how much the driving is part of the job. Note that this does not include needing a car to go to and from work. Some people will get assistance as part of an injury compensation package. The National Disability Insurance Scheme (NDIS) will include vehicle purchase and modifications. *Queensland (Vehicle Options Subsidy Scheme) and Victoria (Vehicle Modification Subsidy Scheme) do assist with the cost of modifications.

For more information, go to www.tinyurl.com/SCIAdrivingresource

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FEATURE

Say it loud, SAY IT CLEAR

Helen Borger

Disability advocates have turned out in force to let their elected representatives know just how they feel about the increasingly ineffective taxi subsidy.

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In late October, people with a disability rallied out the front of the New South Wales Parliament to voice their demands for an increase in the NSW taxi transport subsidy. They highlighted the gross inadequacy of the existing subsidy, and later the same day reinforced their concerns at a forum inside Parliament House hosted by The Greens NSW. The NSW Taxi Transport Subsidy Scheme (TTSS) barely covers a trip ‘around the block’, only paying for half of a taxi fare and is capped at $30. The subsidy has remained unchanged for the past 15 years, while taxi fares have continued to rise. Such a limited subsidy means many people with a disability face enormous transport costs, which affect their ability to participate in work, recreational, medical, and other activities – a point

driven home by one of the rally goers whose fare to attend the protest cost over $100*.

Greg Killeen, Senior Policy and Advocacy Officer, Spinal Cord Injuries Australia (SCIA), spoke at the forum. He said the high cost of taxi transport hindered employment opportunities and increased social isolation.

“People living in rural and regional areas generally have vast distances to travel to and from, or between towns, while people living in Sydney are confronted by increasing traffic congestion and toll roads,” he said.

Unsustainable A survey of 1,100 Wheelchair Accessible Taxi (WAT) users commissioned by the NSW Liberal Government found that WAT users had an average taxi fare of around $33. Greg highlighted that while the average taxi fare was around $33, it “is a self-fulfilling prophecy

FEATURE as the data just displays that people can only afford to travel short distances”.

had doubled its taxi subsidy cap from $30 to $60 in 2008.

A June 2010 NSW Parliamentary Taxi Industry Inquiry Report recommended that the NSW Government increase the TTSS to 50 per cent of a $100 taxi fare capped at a $50 subsidy. Six months later, the NSW Labor Government said Transport NSW would review and evaluate the TTSS. However, this never eventuated and NSW Labor lost office the following March. The current NSW Liberal Government eventually commissioned the WAT study mentioned above but it is yet to act on its recommendations. Meanwhile, The Greens NSW have continued to back the inquiry’s recommendations – in June 2013 they put forward a motion in the NSW Legislative Council, calling on the Government to take up the recommendations of the taxi inquiry report.

The forum’s master of ceremonies and organiser, Tony Jones, Policy Officer, SCIA (and Research and Policy Advisor to Jan Barham MLC), pointed to other findings in the WAT study, which revealed that a quarter of TTSS users had forgone entertainment and cut down on groceries to pay for transport.

At the rally and the forum in October, Jan Barham The Greens NSW Member of the NSW Legislative Council (MLC) restated her party’s backing for an increase in the TTSS. Christian Democrats MLC Paul Green also attended the forum to lend his support.

Among a number of issues, Jan pointed to the affordability barrier highlighted in the 2013 Shrinking Circle survey. The survey says those on the Disability Support Pension spend 11 to 30 per cent of their incomes on taxi fares, while those in part-time employment spend 50 per cent on fares and those in full-time employment spend 35.7 per cent. She also noted that Victoria

Decision makers NSW State Government and Shadow Ministers failed to show up at the forum.

However, Gladys Berejiklian, NSW Minister for Transport, issued a statement, saying: “The NSW Government has carried out a review of the subsidies and incentives that support wheelchair accessible taxi services, including affordability and availability of the Taxi Transport Subsidy Scheme. As part of this work Transport for NSW surveyed more than 1,100 participants about their experience. A number of recommendations to improve the service for customers are now being considered.” The Minister failed to respond to further questioning about what recommendations the Government was considering. Requests for comment from NSW Shadow Minister for Transport Penny Sharpe went unanswered.

“The subsidy has remained unchanged for the past 15 years, while taxi fares have continued to rise.”

Silence on the part of the NSW Government and the Opposition leaves people with a disability in an increasingly difficult situation.

Persisting with the low TTSS subsidy has the potential to negatively affect state and

“People living in rural and regional areas generally have vast distances to travel to and from, or between towns...” www.scia.org.au 11

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federal government initiatives, such as the NSW Living Life My Way and Community Support Program, and the federal National Disability Insurance Scheme (NDIS), which aim to provide people with disability more choice, flexibility and control. “The expected benefits of these policy reforms will be impeded if people don’t have access to affordable taxi transport,” Greg said.

Although Greg wanted to see the TTSS subsidy increased to the recommended 50 per cent of a $100 taxi fare, he would prefer it be increased to 75 per cent of a $120 fare and indexed.

people bring to an organisation – “it needs to be a two-way street”. Government employers must also think more about this, too, he added.

Greg said there were a number of ways to fund an increase in the subsidy: allocate another $25$30 million per annum to the TTSS; stop the WAT Driver Bonus Incentive Scheme and use the funds to pay for the TTSS increase; add 20 cents to each taxi fare to raise around $20 million per annum to allocate to the TTSS; and allocate the revenue from the 99 sets of Nexus plates provided by the NSW Government to the taxi networks.

Mark Tonga, board director at ParaQuad and SCIA member, who helped organise and also attended the rally and forum, agreed that the subsidy should be increased and indexed.

Michael Simpson, General Manager, NSW client services, Vision Australia, also spoke at the forum and supported moves to increase and index the TTSS subsidy, as well as including an option for covering a limited number of longer trips.

He believed such a move would encourage more employers to subsidise transport to and from work for their employees with disabilities. This would increase the likelihood of people with a disability entering the workforce and sustaining their employment.

Rhiannon Cook, Senior Policy Officer, New South Wales Council of Social Services (NCOSS), told the forum that NCOSS would like to see the TTSS subsidy cap raised to $60 per trip. NCOSS’s 2014-2015 pre-budget submission said such a cap would cost $9 million.

More options

After the rally, he said when corporate organisations think about the bottom line, they need to understand it is not just about the balance sheet; it is also about the community and the skills and value that a diverse range of

FEATURE

For more on the TTSS, visit www.scia.org.au * The Greens NSW MLC Jan Barham paid for the taxi fares of people with a disability to attend the rally and the forum. ▪

I ’ V E G OT THE SUPPORT I NEED TO L I V E H O W I WA N T TO LIV E Phone1300 272 273 or visit arcare.com.au

Boosting and indexing the subsidy would encourage more employers to subsidise transport costs.

FEATURE

one step CLOSER TO HOME Maree Hunt, Transitional Services Administrator, SCIA

Forty-three-year-old Hayley was riding on a horse-drawn wagon weighing 850 kgs when she slipped off the side and was run over by one of the wagon’s rear steels wheels. She sustained a spinal cord injury and now has T12/L1 paraplegia. Her sixyear-old son, Riley, was also injured in the accident. He sustained a broken leg. Following the accident, they were treated at different hospitals.

“It was five weeks before I was able to see my son for the first time after the accident. Riley ended up being in hospital for eight weeks and then he went to stay with his grandmother – my mum – as I had to remain in rehab,” Haley says.

“Mum’s home is four and a half hours from the rehab centre, so I have only been able to see Riley every six weeks.”

SCIA’s CHOICES apartment in Little Bay has played a significant role in two of these visits. The apartment is modified accommodation that enables people with a spinal cord injury to practise their independent living skills and spend time with family and friends before being discharged from hospital. It overlooks the Coast Golf Course and the ocean at Little Bay. Inpatients who are SCIA members and their families can stay free of charge.

New experiences “My first visit to the apartment was the first opportunity after the accident to spend time outside of the rehab centre,” Haley says. “Because my family lives so far away, I don’t have many visitors to take me out during the day, and, unlike other patients, I can’t go home on weekends.”

Although Hayley was keen to be with her family, she was unsure about leaving Royal Rehab in Sydney. “I was apprehensive about being away from full14

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time care for the first time. I was going to have to transfer from my wheelchair into mum’s car for the first time, and I was worried the equipment in the apartment wouldn’t be the same or as easy to use as in the rehab centre.”

After the first morning, however, Hayley realised she was able to complete her morning routine by herself and decided to cancel the carers that were scheduled to visit her during the rest of her stay.

She also discovered that having time away from rehab gave her the opportunity to manage her own medication and get used to being out of hospital without the security of a nurse call button.

After the first morning, however, Hayley realised she was able to complete her morning routine by herself.

Further afield The experience was such a confidence boost that Hayley and her family wasted no time in getting out and about. “We visited the beaches at La Perouse and Malabar. Riley and I went to the movies at Westfield Eastgardens, while mum went shopping. We also went to Bear Island and had a meal at the Matraville RSL,” Haley says.

Socialising and having fun in the apartment was also great, too. “We made good use of the barbeque on the balcony.

FEATURE

“We visited the beaches at La Perouse and Malabar. Riley and I went to the movies at Westfield Eastgardens…”

Mum and I really enjoyed sitting on the balcony looking at the ocean. Riley also took a liking to the Foxtel and Nintendo Wii that came with the apartment.”

In fact, Haley had such a good time on her first visit that half way through she called to secure another booking. At the time of writing, Hayley and her family were yet to return for their second visit, but they were looking forward to it, particularly catching a bus into Circular Quay, seeing the Opera House and Harbour Bridge. And they wanted to go back to Bear Island to explore the weekend Aboriginal Culture markets.

No cost worries As staying at CHOICES apartment is free for inpatients who are SCIA members and their families, it has been an opportunity for Hayley and her family to get together without the worry of accommodation costs.

Hayley sees staying at the apartment as one step closer to going home. At the time of writing, she was looking forward to her discharge from Royal Rehab at the end of November 2014.

We wish her all the best and are delighted that CHOICES is playing a role in this. ■

CHOICES APARTMENT Location: Little Bay, close to shops, public transport and entertainment Bedrooms: Three Bathrooms: Two Kitchen and living area: Open plan, two expansive balconies overlooking the Coast Golf Course and the ocean on one side of the apartment, and Port Botany on the other side Modifications: Wide main bedroom doorway, handrails in one bathroom and accessible shower, custom built ramp for access to the larger balcony Transport: Transport to and from the apartment is provided free of charge for inpatients Personal care: Provided free of charge for inpatients Accommodation cost: Free for inpatients who are SCIA members and their families Contact: 1800 879 775

Hayley Fagerstrom (client), Riley Fagerstrom (Hayley’s Son) and June Clinch (Hayley’s mother).

www.scia.org.au 15

Getting back to work is easy with SCIA Workforce.

Ben Lipski

We support people with spinal cord injury and other disabilities back into work. You will receive individually tailored assistance to find suitable employment and long term support in the workplace.

www.scia.org.au | 1800 819 775

WORKFORCE

No turning back

Going back to work was always the only option for Rachael, Jason and Ben but, as each had sustained a catastrophic spinal cord injury and spent months in rehabilitation, was this possible?

Stephen Lowe, Disability Employment Manager, SCIA

Work was a large part of Rachael Presdee’s identity, so returning to employment was on the top of her list after sustaining T11/T12 paraplegia due to a workplace incident. “The only thing wrong with me is that my legs don’t work, my brain is 100 per cent,” she says.

But she could not head back to her old job as a theatre stage manager. She had to put that aside and learn new skills.

Each small step towards re-employment has been in partnership with her SCIA Workforce Employment Consultant Kaylene Farrelly and Job Placement Officer Elena Pascoe.

They tried things out and tested the waters as they went. “At different stages, I had my hand held, was gently pushed or followed my own judgement…I never felt I wasn’t supported,” Rachael says. “People need to try things to get their confidence back. Take the opportunity.”

Now back at work as a data entry officer, Rachael is studying and attending SCIA’s Walk On program.

Taking the initiative Twelve months ago, Jason Parker sustained T4 complete paraplegia.

Before his injury, Jason was a spray painter and never thought he would work in that or a related field again. So during his rehabilitation, the focus was on him retraining or reskilling for a new career.

Mogo Wheelchairs, which custom design and manufacture wheelchairs, provided Jason with the equipment to help him improve his independence.

He was so impressed by the products and the fact they were Australian made that he decided to create a job opportunity for himself.

He spoke to Mogo about the possibility of them offering him work and then asked SCIA Workforce to follow up.

It paid off and Jason now prepares wheelchairs for powder coating two days a week. It is not

always easy, but Jason’s advice to anyone going through something similar is “give anything a go; you won’t know until you try.”

Right frame of mind When Ben Lipski sustained a complete C4 spinal cord injury in a bike incident, there was no chance of him returning to his old job as a builder. However, his employer Aranac didn’t hesitate in offering him another role. The offer made life so much easier for him because during his rehabilitation there was a lot of things going on, and being offered the new job was one less thing on the list of many things to worry about.

“[Work gets] you out; gets you back into life and a step back to normal.”

Aranac created the new role around Ben – initially there was no pre-determined idea of what it would look like. It all started with Ben meeting with John Moxon, the Managing Director of Anarac, and discussing what he thought he could do. They decided to try out a few things.

Ben settled in as a trainee estimator, and SCIA Workforce worked with JobAccess to assist in undertaking the necessary workplace modifications required for Ben to do the role.

Ben has been supported by Kaylene from SCIA Workforce throughout the process.

Ben’s motivation for going to work is simple: “I’m pretty money driven; I have expensive hobbies I want to keep up.” Moreover, reengaging with the workforce has had a positive impact on Ben. “It’s getting you out; gets you back into life and a step back to normal.”

He says your motivation comes when you are ready. He suggests: “Take the time you need to get into the right frame of mind for work.” ■ www.scia.org.au 17

IN PRACTICE

Do you have choice and control?

How does the National Disability Insurance Scheme (NDIS) provide you with better choice and control over disability supports? Is this working?

Ebony Birchall, Lawyer, Medical Law Practice Group, Slater and Gordon

As you know, the NDIS is being rolled out in stages and should be accessible to all eligible Australians by July 2019.

The scheme allows participants (with the assistance of a planner) to examine their personal needs and goals, and create a plan for what supports will be provided by the NDIS. The plan needs to be approved by the National Disability Insurance Agency (NDIA), which administers and delivers the scheme.

If a participant disagrees with a decision the NDIA has made, they can request an internal review. If the review is unsuccessful, the participant can apply to the Administrative Appeals Tribunal to have the decision reviewed externally.

In the first year of the scheme, 40 complaints were made related to the supports the NDIA had deemed as not ‘reasonable and necessary’, states the ‘4th Quarterly Report to COAG Council on Disability Reform’.

Choosing a provider The scheme also allows participants to elect who will manage their plan. Participants can have the NDIA or a private plan management provider manage their plan, or they may selfmanage their plan, or have a combination of these options.

Self-managing means the participant is responsible for sourcing and arranging supports. Participants are sometimes able to choose providers who are not registered with the NDIS. As part of self-managing, participants must set up a separate bank account for NDIS entitlements and manage their own accounts for the services they have used. This includes reporting back to the NDIA. Note that if a participant is receiving in-kind support (such as from a Government service rather than a private provider), they are not able to solely manage their plan.

In practice, it seems that participants are rarely electing to self-manage with only 2 per cent of participants choosing this option across Australia, states the report to COAG. It is not clear from current research what is stopping participants from electing to self-manage. The NDIA does recognise in its ‘Progress Report: Year One’ that some people have found the NDIA processes hard to use and that the self-management process needs to be simplified. Perhaps further work needs to be undertaken to enable more participants to choose to self-manage their plan.

Spending plans Participants are also given some flexibility in how they spend their entitlements. Participants can elect to use more of their entitlements for one support one month and less on another (as long as it stays within the budget of their approved plan).

This is only available for supports deemed “flexible supports”, which are supports for activities of daily living and community access.

The NDIA recognises in the ‘Progress Report: Year One’ that participants need to be made more aware of the flexibility they can exercise around the use of their funds. This suggests that participants are not always making use of this mechanism; however, there does not appear to be any reported statistics at this stage. ■ Ebony Birchall, Lawyer, Medical Law Practice Group, Slater and Gordon.

She regularly represents people with disability and is passionate about improving standards of healthcare and disability support. Email Ebony at ebony.birchall@slatergordon.com.au

PACK it up and GO! Portable people movers for travellers who need transport when they reach their destination. By car or train, boat or plane; fold them up and you’re ready to go.

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www.scia.org.au 19

The National Public Toilet Map Find your closest accessible toilet at the touch of a button.

Info on over 16,000 public toilets in Australia Reduce the stress of finding an accessible toilet Freedom to get out and enjoy your life

Use the map to: find and save accessible toilets view information like accessibility, open hours, shower facilities and baby/adult change tables plan a trip and see the facilities en-route use map data in publications or app link toilet locations to your GPS add a public toilet to the map

Help us UPDATE the Toilet Map Volunteer as an Access Officer to help update the map with accessible toilets across NSW. You will: choose a local area that suits you identify and assess toilets missing from the map

We need you!

re-assess toilets already on the map collect your $100 voucher

*certain criteria must be met, terms & conditions apply

NSW Accessible Toilets Project

www.scia.org.au/accesstoilets

DAILY LIVING

How do you improve access to public toilets?

“Get the local mayor to drink four litres of water, put them in a wheelchair and tell them they are on their own and need to find an accessible toilet,” says David Crawford.

Helen Borger

David, who has C6/C7 quadriplegia and leads the SCIA Teamsafe program, jokingly says the mayoral drinking challenge is the short answer to improving toilet access for people with disability.

Seriously, he says much more can be done to improve access.

Right path

On the South Coast of NSW, the Shoalhaven Council has come a long way, too, says Bill Deaves, a SCIA Volunteer Peer Support Worker. Bill has paraplegia and is on the Council’s access The upgrading of the National Public Toilet Map (NPTM) is one committee. He is excited about the new toilet that is being built at way for this to happen. The NPTM is a nationally available website Burrill Lakes; it includes a large room, bed lift, ceiling lift and rail. In that provides accessibility information on over 16,000 publicly other locations, concrete paths have been built to the toilets, he says. available toilets across Australia.

The Shoalhaven Council area is a long way from being SCIA is leading the upgrade in New South Wales by auditing a toilet haven, however. Bill is always on the lookout for where toilets across the state. This includes detailing the type of access things can be improved, such as some of the fast food outlets and encouraging toilet owners to adopt best practice toilet having too many bins in the toilets – making it hard to circulate. ■ accessibility. Volunteers are welcome to help out with the auditing.

Caught out David lives on the Northern Beaches of Sydney and has experienced the highs and lows of trying to find and use accessible toilets. He says some are state-of-the art, but others leave a lot to be desired. To make sure he is never caught in a difficult situation when he is out, he takes an emergency two-litre bottle with him and tries to find a secluded place to empty his catheter bag – but how satisfactory is this?

Kelly McCann, who heads up the SCIA NPTM project, has quadriplegia and is ventilated, says those maintaining public toilets sometimes need reminding about the function of a toilet. “Some use their toilets as storage space, so getting to the toilet itself can be an issue,” she says. “I generally let the toilet owners know of the feedback from our access officers’ assessment of the toilet and provide information on accessible toilets, so the owner has the option to make changes to their toilet if they wish to do so.”

To become a volunteer National Public Toilet Map access officer, contact Kelly McCann on 0412 177 643, email accesstoilets@scia.org.au or visit www.scia.org.au/accesstoilets

Wheelchair accessible accommodation and respite services

Relax on the beautiful Sunshine Coast hinterland in a supported environment.

Tourist attraction

Pomona Homestay provides fully wheelchair accessible accommodation and respite services for individuals and families.

Toilet owners in Ballina, on the North Coast of New South Wales, have been taking notice. Linda Vick, an SCIA member with T7 paraplegia, has been on Ballina Council’s Access Reference Group for a number of years. She has advocated for and seen the standard and number of accessible toilets in the area increase.

The toilets also attract tourists. “People with a disability like coming to Ballina for holidays and other things because they find it has good accessible toilets,” Linda says. Regardless, she notes that it is hard to build a toilet that is all things to all people: “You can make them universal, but you can’t meet everyone’s needs all the time.”

The Access Committee also comes up against problems, such as needing to lock the accessible toilets in town with MLAK keys, as it is the only way to keep them clean and free from syringes.

Set on 8 peaceful acres near the picturesque town of Pomona, in the Sunshine Coast Hinterland, it offers an escape from the everyday, with as much or as little support as you need.

Pomona Homestay 12 Bazzo Drive Pomona QLD 4568 Phone: (07) 5485 0998 Mobile: 0401 563 336 Email: info@pomonahomestay.com.au Web: www.pomonahomestay.com.au Pomona Homestay is an initiative of

SS

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Queensland Support Services & Solutions

www.scia.org.au 21

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TRAVEL

A swell time

Riding out an eight-metre swell in gale-force winds does have its funny side.

Helen Borger

SCIA member David Erikson found this out while taking in a mid-year comedy cruise up the East Coast of Australia on P&O’s Pacific Pearl. David, who has a T4 spinal cord injury, and his partner Lisa Trail spent five days and four nights cruising from Sydney into the duty-free zone off the North Queensland coast.

The Pacific Pearl swimming pool.

Getting to the Sydney Overseas Passenger Terminal was easy, as David and Lisa organised a lift with other cruise goers from Newcastle. The terminal is wheelchair accessible and their luggage was taken from the minibus to the terminal and then onto the boat for them.

“The bloke at the gate pushed me up the gangway to make sure I got on the boat okay,” David said. “We embarked in groups and were given an orientation as well as the safety and fire drills before heading to our rooms, where our luggage was waiting for us.”

Cabin quarters David was impressed by the cabin, which was purpose built for someone with a disability. The toilet and shower were accessible. Nevertheless, he brought his own commode; there was enough room to set it up and transfer to and from his wheelchair. The bed was a little low, though, so he needed a slide board to transfer.

He made sure he took along spare catheters and catheter bags; otherwise, it would have been very expensive to replace them while on board. The onboard medical services are not covered

by Medicare or private health insurance.

Despite the wild seas and confines of a cruise ship, getting to and from the cabin wasn’t too difficult. However, one of the two hallways was narrower than the other, and even in the wider hallway he had to ask the cleaners to push their carts inside the rooms so he could get past. The lifts were accessible.

Service with a smile The staff were very friendly and went out of their way to be helpful. And the boat had a number of different venues hosting a range of comedy acts, such as the funny exercise classes on the covered area of the main deck and stand-up routines in the auditorium and smaller bars.

He wasn’t perturbed by the huge waves. “If it was too rough I would go inside…”

David wasn’t perturbed by the huge swells.

“If it was too rough I would go inside – to the middle of the ship.” He also spent time making sure his partner Lisa was okay, as she got sea sick.

Unfortunately, the big swell prevented the ship from entering the duty free zone. “So we couldn’t do any duty-free shopping,” he said.

The trip cost around $700 including the food and entertainment; drinks were extra.

For more on P&O Cruises, visit www.pocruises.com.au ■ www.scia.org.au 23

INFORMATION & RESOURCES Sipping Champagne through a Straw: Beyond good enough

by Milena Morrow Milena was born in Australia with a severe disability. She shares her struggle with feelings of unworthiness and a decision she regrets. However, she finally takes control of her own destiny after a long journey of self-discovery.

Rolling with the Punches

by Ian Simpson Ian shares his story, from representing Australia in table tennis at the Paralympics and in wheelchair rugby at two world championships to his career as a history teacher and learning designer. Ian is living proof that a sense of humour can be one of our greatest assets.

The spinal cord injury pain book

by Philip Siddall, Rebecca McCabe and Robin Murray Chronic pain affects as many as two out of three people with spinal cord injury.

This practical book provides the latest information on how pain works and addresses specific pain challenges for people with spinal cord injury.

Toe Up to 10K: A Journey of Recovery From Spinal Cord Injury

by Steven Fujita Steven was diagnosed with meningitis in 2012. He initially improved but then ended up in intensive care with spinal cord damage. He could not breathe independently nor move his legs. Steven takes the reader on a journey of recovery.

No Ordinary Days: A journey of activism, globe-trotting and unexpected pleasures

by Susan Sygall From traveling through Southeast Asia on local buses to hitchhiking through New Zealand in her wheelchair, Susan redefines how we see ourselves, see others, and live our own lives.

Dad Has a Wheelchair

by Ken Jasch and Anita DuFalla Julia’s dad uses a wheelchair. Join them as they play together, go fishing, visit the zoo and camp. The book is a wonderful way to teach kids that a parent with a disability is no different than other parents. Visit www.dadhasawheelchair.com to learn more.

The Right Space – A Wheelchair Access Guide

by Albert M. Ayala An easy-to-understand resource for designing and remodelling an accessible home. Whether your needs are immediate or you are planning for the future, this guide’s drawings will help you create a valuable asset for yourself and for others. (Also available on Kindle).

Pain Management Network – Spinal Cord Injury Pain Website & Resources by the NSW Agency for Clinical Innovation (ACI) This website is designed to help people gain a better understanding of pain and help people to develop skills and knowledge in managing pain. Visit the website www.aci.health.nsw.gov. au/chronic-pain to learn more.

Evander’s Meditotz Adventure by the Medikidz team of doctors and reviewed by Australian paediatric spinal cord injury medical specialists Comic books based on real life stories of Australian children who live with a spinal cord injury.

Medikidz explains spinal cord injury By the Medikidz team of doctors and reviewed by Australian paediatric spinal cord injury medical specialists Comic books based on real life stories of Australian children who live with a spinal cord injury.

These publications and resources are available for loan or download from the SCIA Information Services SCI Resources Library. For details and to borrow please visit library.scia.org.au, call 1800 819 775 or email library@scia.org.au. In addition to the library, SCIA Information Services through its SCInfo service provides practical, relevant information on a comprehensive range of topics delivered through direct contact, publications and SCI Resources on our website to people with a spinal cord injury and similar disability, their families, and carers. SCInfo can be contacted by phone on 1800 819 775, email information@scia.org.au or visit www.scia.org.au/information.

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GOODS & SERVICES Water ski from October to April New South Wales Water Ski Federation – Disabled Division – runs a water ski program between October and April. It holds open ski days for people to try water skiing and develop their skills. It also holds training days for those who are serious about competing and want to train with a coach or professional skier. Skiers can compete for state, national and world titles.

Modified sit skis and other equipment including life jackets, ski ropes and handles are provided. Skiers can be towed at low or high speed. The ski days are held at NSW Waterski Gardens (Wisemans Ferry), St George Rowing Club (Cooks River) or Manly Dam. For more details, phone 0412 966712, email sharon@disabledwaterskinsw.com or visit www.disabledwaterskinsw.com

Easy access to hot air ballooning Global Ballooning’s Easy Access Basket (EAB) allows people with a disability to enjoy the experience of hot air ballooning. With the help of Burt & Davies Transport Accident Lawyers, Global Ballooning developed the EAB, which has a door to allow people with a disability, including those with serious physical disabilities, to enter and exit the basket more easily – rather than climbing over the top of the basket. The basket also has customised seating, seat belts and a grab handle suspended from the burner frame. Flights are available over the Yarra Valley and Melbourne. For more details, phone (03) 9428 5703 or visit www.globalballooning.com.au 2014 0106 Spinal Cord Injuries Assoc 130Hx90W OL.pdf 1 06/01/2014 12:56:20 PM

Make a fashion statement

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IZ Adaptive creates stylish and comfortable clothing for people who use wheelchairs. The clothing’s cut-lines are specific to a seated body shape. And the clothes are structured so they fall and drape naturally and don’t interfere with wheelchair mechanics. They are also made from stretch fabrics that will not gape, bunch or add unnecessary bulk. Added features include open-back styles, strategically placed zippers and magnetic buttons to facilitate donning and doffing the clothes.

The designs save time and effort regardless of whether you dress independently or require assistance. For more details, visit www.izadaptive.com

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www.scia.org.au 25

CALENDAR

EVENTS 2015 FEBRUARY 4-6 Having A Say Conference 2015, Deakin University, Waterfront Campus, Geelong, VIC www.valid.org.au/conference

16 - 17 National Disability Services (NDS) NSW 2015 Conference, Hilton Hotel, Sydney, NSW www.nds.org.au/events/1413497081

24 - 25 Criterion Conferences, Getting Workforce Ready for the NDIS

JUNE 6 - 11

8th World Congress of the International Society of Physical and Rehabilitation Medicine, Berlin, Germany www.isprm2015.org

www.ndisworkforce.com

MARCH 18 - 19 6th Annual National Disability Summit 2015, Sheraton Hotel Melbourne, VIC www.informa.com.au/conferences/ health-care-conference/national-disability-summit

23 - 24 Third Sector Expo, Melbourne, VIC www.thirdsectorevents.com.au

MAY 7 The ATSA Independent Living Expo, Brisbane www.atsaindependentlivingexpo.com.au

18 - 19 Pacific Rim International Conference on Disability and Diversity, Waikiki, Hawaii www.pacrim.hawaii.edu

20 - 22 European Spinal Cord Injury Federation 2015 Congress and Assembly of Delegates, Maximus Resort (near Brno), Czech Republic www.escif.org/ESCIF,,news&showNews=NEWSXRVKGX11272014133048

21 - 22 Carers NSW 2015 Biennial Conference, Novotel Sydney Olympic Park, NSW www.carersnsw.org.au/page/737/carers-nsw2015-biennial-conference

JULY

13 - 14

29 - 30

The ATSA Independent Living Expo, Sydney

Australian Community Workers Conference and Exhibition, Hilton on the Park, Melbourne, VIC

www.atsaindependentlivingexpo.com.au

14 - 16 4th Joint Annual Scientific Meeting of ISCoS and Asia, Fairmont The Queen Elizabeth Hotel, Montreal, Canada

www.informa.com.au/conferences/healthcare-conference/australian-communityworkers-conference

www.iscosmeetings.org www.scia.org.au 27

POLICY & ADVOCACY

NSW Taxi Transport Subsidy Scheme The NSW Taxi Transport Subsidy Scheme (TTSS) subsidy has not been increased since 1999; however, taxi fares have increased by 60 per cent since then. Further to the SCIA Policy and Advocacy team’s ongoing systemic advocacy on the issue, a number of SCIA employees, members and supporters attended a good oldfashioned rally outside NSW Parliament House to highlight the issue and hopefully gain media attention. Unfortunately, little media attention occurred due to former Prime Minister Gough Whitlam passing away. The only coverage was Greg Killeen, SCIA Senior Policy and Advocacy Officer, being interviewed on ABC Radio.

After the rally, Greg and a number of disability sector representatives were invited to present at a TTSS Forum inside NSW Parliament House. The forum was organised

by Jan Barham, The Greens NSW Member of the Legislative Council, and her staff. It included presentations by disability sector representatives, including the following: Michael Simpson, Vision Australia; Rhiannon Cook, NSW Council of Social Services (NCOSS); and Samantha French, People with Disability Australia (PWDA).

The cost of taxi transport reduces the ability to access the community and increases social isolation.

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disability. This is particularly the case for people who need to travel regularly to get to and from work, education or training, and especially people living in rural and regional areas who travel long distances.

Furthermore, a large percentage of TTSS participants are in receipt of Centrelink payments or are low income earners, and the cost of taxi transport is adversely affecting their ability to access the community and is increasing social isolation.

SCIA Policy and Advocacy will continue to lobby for an increase in the TTSS subsidy, in collaboration with other disability sector representatives. Hopefully, whichever government is in office in NSW around the middle of 2015, the long-awaited and much-needed increase in the TTSS subsidy will be included in the 2015-2016 budget.

SCIA Policy and Advocacy will also raise this issue again during the annual Independent Pricing and Regulatory Tribunal (IPART) Taxi Fare Review. The IPART review is currently calling for submissions. If you would like to make a submission go to www.ipart.nsw.gov.au

SCIA would like to thank all of the people who turned up to support the rally and the forum, and to acknowledge the work done to organise the forum by Jan and her researcher, Tony Jones, who also works parttime as a SCIA Policy and Advocacy Officer.

The previous IPART Taxi Fare Review reports have recommended that the NSW Government address the TTSS subsidy, as any recommendations to increase taxi fares and charges will have an ongoing negative impact on people with disability who are reliant on taxi transport.

A few years ago the NSW Government said the NSW TTSS was the most “generous” subsidy scheme in Australia. However, it is now considered the least generous as it has become ineffective for many people with

If you would like to discuss any transport related issues please contact SCIA Policy and Advocacy via e-mail policyteam@scia.org.au or by phone toll-free 1800 819 775.

POLICY & ADVOCACY

The NDIS Annual Report 2013 – 2014 (link below) has been released. Some of the following information from this report has already been reported in an August 2014 NDIS media release, which was adapted and published in the spring 2014 Accord.

• T he average cost of individualised NDIS support packages in the first year of the scheme was $34,600 – within the funding expectation of $35,000.

• The average time taken to determine eligibility has decreased from 29.7 days in the first six months of the scheme, down to 13.3 days.

• NDIS participant satisfaction remains very high at 1.66 on a scale of +2 (very good) to -2 (very poor).

• 8,585 people have been assessed to be eligible for the NDIS, with 7,316 having approved individualised support plans in place by the end of June 2014.

• More than $130 million is estimated to have been committed to NDIS participants in 2013-14.

NDIS Participant Satisfaction Rating

+2

-2 VERY POOR

1.66

VERY GOOD

The NDIS Annual Report says there are approximately 1,350 registered service providers across the four trial sites, the National Disability Insurance Agency (NDIA) has employed 516 staff across the trial sites and its national office, and nearly 11 per cent of this workforce identified as having disability – compared with around 3 per cent for the Australian Public Service (APS) – and 53 per cent identified as having a lived experience of disability. For more details and a copy of the report, go to www.ndis.gov.au/document/925 NDIS Rights – a new website have been set up by Community Legal Centres providing fact sheets about legal rights when accessing the scheme www.ndisrights.org.au

If you, or somebody that you know, is currently a participant in the NDIS trial sites, SCIA Policy and Advocacy would appreciate you sharing your knowledge with it to provide a personal perspective of how the NDIS is operating. You can contact SCIA Policy and Advocacy via e-mail policyteam@scia.org.au or by phone tollfree 1800 819 775.

EnableNSW The NSW Health Department operates and manages EnableNSW, which provides health, medical and equipment programs to support people with disability and people with health and medical conditions to live in the community. EnableNSW management hosted a number of briefings in midNovember 2014 for non-government organisations (NGOs) representing the disability and community sector.

More than $130 million is estimated to have been committed to NDIS participants in 2013-14.

The briefings were particularly for NGO staff who support EnableNSW clients with individual advocacy, as well as staff who work in policy and systemic advocacy.

SCIA Policy and Advocacy representatives attended both sessions which were held at the EnableNSW Parramatta head office. The briefing agenda was to provide answers to questions raised by NGO staff about the following: equipment and service waiting and processing times, implementation of person centred approaches, EnableNSW’s involvement in the National Disability Insurance EnableNSW waiting times as at November 2014 8

Waiting Time: Months

National Disability Insurance Scheme (NDIS) update

Prosthetic Limb Program: prescription and fitting of artificial limbs

7 6

Priority 1 aids and equipment: lifting hoists, adjustable beds, pressure care mattresses, etc.

5 4 3 2

Priority 2 aids and equipment: wheelchairs, etc.

1 0

Prosthetic Limb Program

Priority 1 aids and equipment

Priority 2 aids and equipment

www.scia.org.au 29

POLICY & ADVOCACY Scheme (NDIS) trial, equity of access, complaint handling, stock equipment and standardised purchasing, and Commonwealth Home Care Packages.

EnableNSW’s briefing also discussed the plans to update the EnableNSW program information. This included opportunities for seeking feedback from participants in other areas, such as consumer information priorities, website redesign project, program guidelines, equipment procurement, and identifying and removing barriers.

Regarding equipment and services, EnableNSW operates a number of programs, including Aids and Equipment Program, Prosthetic Limb Service, Away from Home Haemodialysis (AFHH) Program, Statewide Paediatric Equipment, Home Respiratory Program and IPTAAS – Travel Assistance.

Soon after EnableNSW administration was centralised to the Parramatta head office about five years ago, the

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The honeymoon is over and there is a shortfall in funding which has resulted in a blowout in waiting times. streamlining of the administration and unifying of the policies and procedures created some financial savings and reduced the waiting times to receive equipment. But it seems the honeymoon is over, and it was reported that there is a shortfall in funding that has resulted in a blowout in waiting times for some of the programs.

As of November 2014, there was approximately $15 million of unfulfilled applications across all EnableNSW programs. However, the majority of the unfunded items are in the Priority 2 classification (aids and equipment),

such as wheelchairs, where there is a waiting period of seven months. Priority 1 items (aids and equipment), such as lifting hoists, adjustable beds, pressure care mattresses, etc, have a three-month waiting period. The Prosthetic Limb Service has no waiting list.

SCIA Policy and Advocacy appreciates that EnableNSW has been very proactive in working with the community and disability sector. And we look forward to providing comment and feedback on the EnableNSW resources being developed, such as the aids and equipment procurement process.

Notwithstanding these outcomes, SCIA Policy and Advocacy is acutely aware of the urgent need for greater funding for EnableNSW’s programs, and it will continue to advocate for funding to meet consumer needs and reduce waiting times.

To discuss any EnableNSW issues, email policyteam@scia.org.au or phone toll-free 1800 819 775. ■

What’s your goal?

Walk On can help you get there.

Places are now available for SCIA’s leading activity based therapy program - Walk On. Short and long term programs to suit all levels of spinal cord injury and other neurological disabilities.

www.scia.org.au | 1800 819 775 BRISBANE

SYDNEY

MELBOURNE

PERTH

REGIONAL ROUND UP

Leah Ogden, Regional Officer 02 4225 1366 Illawarra@scia.org.au

ILLAWARRA I would like to welcome Sue Thomas to the SCIA Illawarra support network, as our Volunteer Peer Support Worker for the Far South Coast.

Sue, from Bermagui, is available to assist SCIA clients and members who live in the Eurobodalla Shire and Bega Valley Shire areas with peer support.

She has local knowledge and lived experience and is happy to chat with you about living with a spinal cord injury (SCI).

If you feel that peer support would be helpful for you, please let me know and I will connect you with Sue. She is available to chat via telephone or email.

Sporting chance You may recall reading an article about Sue in the Winter 2014 edition of accord. As a keen snow sit-skier, Sue is currently in the process of attaining her adaptive ski instructors qualification.

One of the things that she has expressed a great interest in is developing organised sporting opportunities for people who have a spinal cord injury, who are living in regional south coast areas.

If this is something you are interested in pursuing, please let me know. It would be great to have the choice of participating in an individual or team sport, which can happen if enough people registered to make it a viable pursuit.

Pain toolkit A new resource, The SCI Pain Toolkit has officially been launched. The website is now live and can be viewed at www.aci.health. nsw.gov.au/chronic-pain/spinal-cordinjury-pain It contains information on understanding pain after a spinal cord injury, getting help from your health care team, physical activity and exercise, lifestyle and nutrition, pain medications, thoughts and feelings and sleep.

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Lee Clarke, Regional Officer 02 6624 5499 | 0421 055 992 northernrivers@scia.org.au

NORTHERN RIVERS With the weather warming up to extreme heat waves, everyone is looking for a way to keep cool during the summer. Maybe it is time to get out and about to the local beaches. I encourage anyone who loves the water to book in for Disability Surfing Association (DSA) events. These events are run by dedicated volunteers and are very well organised.

Dates for DSA Far North Coast: • S aturday 18 January 2015 – Cocky Classic/ Let’s Go Surfing, Kingscliff Beach (10am1pm); in conjunction with Gold Coast DSA • S aturday 21 February 2015 – Rob West Dunga Day Major Fundraiser, Minne Waters (7am-1pm) • S unday 22 February 2015 – Hands On Day, Minnie Waters (10am-1pm) • S aturday 28 March 2015 – Let’s Go Surfing, Clarkes Beach, Byron Bay (10am-1pm) Dates for DSA Mid North Coast: • S aturday 7 February 2015 – Scott’s Head (9am – 1pm) Dates for DSA Hastings/Port Macquarie: • Saturday 14 February 2015 – Flynn’s Beach • Saturday 14 March 2014 – Flynn’s Beach For more details on event dates and times, visit the DSA website www.disabledsurfers.org If you prefer to stroll along the beach with family or friends then why not try a beach wheelchair. Visit www.disabledsurfers.org/ nsw/beach-wheelchair-locations or your local council website, for more details.

Imagine Me Imagine Me workshops were held in Ballina and Coffs Harbour during November 2014 with some fabulous works being produced.

The workshops used digital photography to create innovative individual artworks.

Everyone had a lot of fun with a great turnout on exhibition day in Ballina and Coffs Harbour. Sue Murray, the workshop facilitator, is a very motivated photographer who brings out the best in all who attend her workshops.

For more, visit www.imagineme.com.au

REGIONAL ROUND UP

Glenda Hodges, Regional Officer 02 6766 6422 | 0427 257 471 newengland@scia.org.au

NEW ENGLAND Another busy season has passed with another even busier one coming up for our services in New England.

Our newsletter, Nuts & Bolts, is going well, as is the New England spinal cord injury community Facebook page, ‘Over the Back Fence’. The page is only open to those with spinal cord injuries (SCI) and their carers, family and friends. This keeps the page relevant to those who want to talk about their experiences.

We also have new volunteer peer support workers: Bruce and Margie Cole, who live on the coast at Old Bar, who are happy to talk to people in the Manning/Taree region. Brett Lloyd, who lives in Inverell, is happy to talk to people in the Inverell and Glen Innes regions. Bruce and Brett have quadriplegia.

Forum update Forums are continuing in Armidale and Tamworth on a regular basis. A huge thank you must go to those who speak at the forums and those who come along regularly.

Guest speakers have included the following: representatives from Fair Trading and Centrelink; Bernadette Grattan, the Continence Nurse; and Cindy Duggan from 360 Fitness.

Other guests have talked about the NDIS and related changes, and the services that will be affected. The impact on Home Care is a major issue for many. Service provision will be problematic in some regional areas as the choice of service providers is very limited.

Pain management This month, Tamworth is hosting a forum with the Pain Management Network, who will be introducing the new Agency for Clinical Innovation (ACI) website and resources. The presenters will be Dr James Middleton, Director of the Statewide Spinal Service, and Lyndall Katte, Project Officer Chronic Pain and Spinal Cord Injury, ACI. More about this great project and the forum will be included in the next edition of the Accord.

Craig Lees. Regional Officer 02 6372 1892 | 0413 367 523 centralwest@scia.org.au

CENTRAL WEST Under the current Community Support Program and ultimately the National Disability Insurance Scheme, consumers are being encouraged more than ever to be involved in managing their own care funding.

Currently in the Central West region about 80 per cent of people with a spinal cord injury (SCI) are already managing their own care through Allowance Inc. or the Direct Funding model. The Lifetime Care and Support Scheme also provides the option to selfmanage personal care.

Jayme has taken the initiative to establish his own care service, Constant Care, within the Cowra area.

Some individuals utilise the Allowance Inc. model or the like because they prefer having more control over the way their care is delivered. However, there are others using a self-directed model because reliable alternatives are not available where they live.

Inflexibility regarding the timing of shifts is an oft-quoted reason for leaving a local service provider – how many adults love being put to bed at 5pm? Some also cite the hiring, firing and training of staff as something they find stressful.

Constant care One person who fully appreciates this dilemma is Jayme Langfield from Cowra.

He has chosen to manage his own care funding and, in doing so, has found he has a knack for hiring and training reliable care staff to meet his needs.

Having a C5/C6 spinal cord injury, Jayme feels he has insight into the requirements of people with similar injuries. So he has taken the initiative to establish his own care service, Constant Care, within the Cowra area.

He has sought to differentiate his business by providing an attentive, flexible and dignifying level of customer service. It is backed by his pool of fully trained and reliable staff. He has also set up another enterprise, wheelchair accessible vehicle hire.

Jayme’s example shows that it is possible to find and successfully respond to unique unmet needs in the community.

For more details about Constant Care, phone 0412 342 567 or email wyanna@yahoo.com

www.scia.org.au 33

REGIONAL ROUND UP

Nazim Erdem, AQA Victoria 03 9489 0777 | nazimerdem@aqavic.org.au

VICTORIA Last year, Foundation 97 Ltd announced that Wellspect Healthcare, a respected provider of urological and surgical products and services, had come on board as a sponsor. For more information on Wellspect, visit www.lofric.com.au. For a sample of their LoFric catheters, contact Foundation 97 Ltd, email lifeisbeautiful@f97.com.au or phone or text 0417 895 166.

Also, Technical Aids for the Disabled Victoria (TADVIC) has changed its name to Solve Disability Solutions. It is a notfor-profit organisation that makes and modifies equipment for people with disabilities whose needs cannot be met commercially. For further information regarding services and eligibility, phone 1300 663 243, email info@solve.org.au or visit www.solve.org.au

Take a break in Vic Murahnyi Break is a B&B offering wheelchair accessible accommodation on a tranquil five acre bush property minutes away from coastal Torquay, with a private entrance and car park. It is located only one and a half hours from Melbourne. It is an ideal first stopover for your journey along the Great Ocean Road.

Clarifying Qld preparations I have been fortunate enough to meet with representatives from the Queensland Department of Communities, Child Services and Disability Services (Disability Services), who were able to defuse some of the confusion about the scheme.

Some noteworthy points from my foggy recollection are as follows: • Disability Services has approximately 45,000 participants (“participant” is the official term) who they estimate are eligible for the scheme and that figure may rise to 90,000 by 2019.

• Disability Services aims to prepare or induct all 45,000 participants by finding nine different organisations to carry out this work as part of the NDIS Participant Readiness strategy, which will run through 2015. The participant induction education will be conducted by these nine organisations based on region and/or type of disability.

Throughout 2015 there will be education arrangements similar to the participant education arrangements for non-government organisations that are unsure of how to prepare for the NDIS. For more information, Google “NDIS readiness initiatives” or visit www.qld.gov.au/disability/adults/ready-for-ndis/index.html ■

It is a one-bedroom facility with a separate living area and a flat, level accessible entrance. There is a large open bathroom with a roll-in shower and hand held shower rose. If needed, a carer can be accommodated on site, too. For more information, phone 0421 120 732 or email murahnyibreak@gmail.com

MANUFACTURERS AND IMPORTERS OF

SPECIALISED DISABILITY EQUIPMENT Para Mobility is an innovative Australian company with a unique understanding of the specific lifting requirements for people with a disability.

Tony Leggett, SCIA Member QLD 07 5485 0998 | tony@qsss.com.au

QUEENSLAND

Some of our products include; IBIS Car Access Lifter, Pelican & Kingfisher Pool Hoists, Ceiling Hoist Systems, Sherpa Stair Climber, & the Delta Platform Lift.

Queensland was a relative latecomer to the National Disability Insurance Scheme (NDIS) table, with the Queensland Premier, Campbell Newman, only signing on months before the 2013 federal election.

Each state is implementing the NDIS in its own way and Queensland is no exception. Queensland is not bothering with any trial sites, it is simply rolling out region by region.

The logic is we will monitor the progress of interstate trial sites and apply any lessons learned. The NDIS will roll out in Queensland on 1 July 2016 and the hope is it will be fully implemented by 30 June 2019.

So far a memorandum of understanding has been signed between Queensland and the National Disability Insurance Agency (NDIA). NDIA representatives established a “presence” in Queensland in August with advance teams in Brisbane and Townsville.

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YOUR CHOICE, YOUR CONTROL Supporting inclusion and independence with Australia’s foremost exhibition of aids, equipment & allied services

7 May 2015 Royal International Convention Centre, Brisbane

13-14 May 2015 Grand Pavilion, Rosehill Racecourse, Sydney On display will be the latest in aids, equipment and assistive technology, as well as options for mobility, services and lifestyles.

The event is open to visitors of all ages, including those with a disability, seniors and their families, friends and carers.

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or for more information phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au ATSA Independent Living Expo www.scia.org.au 35

“It’s amazing how unwilling the world is to accept new ideas.”

continued from page 7

“When I first started working in this area, virtually the entire medical and scientific profession believed it was impossible for any damaged wiring in the brain or central nervous system to form new connections of the body’s own accord,” Geoff said in 2007.

Researchers in many countries are now working on a range of potential treatments for spinal and nerve injury including electrical stimulation, drugs to promote nerve regeneration and the use of embryonic stem cells. But Geoff ’s team have focused solely on stem cells located within the upper lining of the nose – the only area of the body where nerve fibres spontaneously regenerate themselves.

Unlike embryonic stem cells, using a patient’s own nasal cells means there is no risk of immune-system rejection, and nor are there any of the ethical controversies that continue to surround the use of embryos for medical experimentation and treatment. Geoff ’s method involves taking nasal nerve cells from patients, multiplying them in a lab and then injecting them into the spinal cord where they then help create a connecting ‘bridge’,

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enabling severed nerve fibres to regrow. With the help of this bridge, Geoff has long asserted, the nervous system’s own ability to form new connections is then able to kick in.

One of his chief benefactors has been London chef David Nicholls, whose son broke his neck diving into the surf at Bondi Beach during a gap-year trip to Australia in 2003. Establishing the Nicholls Spinal Injury Foundation to raise funds for Geoff ’s research, David ran into an example of medical establishment conservatism. “You’re filling [your son’s head] with the dream that he’s going to walk again,” his son’s medical consultant warned.

Recalling that story, Geoff says, “It’s amazing how unwilling the world is to accept new ideas.”

However, Geoff joins with other researchers in warning that extensive clinical trials have still to be conducted before the efficacy and safety of his approach can be confirmed.

For his part, David makes a more straightforward case for open-mindedness.

“Everyone said I was wasting my time”, he said in London late last year. “But what is life without hope?” ▪

www.scia.org.au 37

ndependenceexpo is on again!

Spinal Cord Injuries Australia

Following on from the huge success of 2014, be sure to register your interest to exhibit at the next SCIA Independence Expo in 2016.

Don’t miss your opportunity to connect with people who have physical disabilities and their family, friends and carers who come from all over Australia.

nde pen den expce Apr o il

Spin al C ord Inju ries Aus trali a

Register your interest at www.scia.org.au/expo2016 expo@scia.org.au | www.scia.org.au | 1800 819 775

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