Accord 2017 summer by Spinal Cord Injuries Australia

Summer 2017

Looking beyond disability to open employment doors

THE BIRTH OF DISABILITY RIGHTS IN AUSTRALIA BE MORE INDEPENDENT AT HOME

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Features

Daily living

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Policy and advocacy

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From the CEO From the President News Fundraising

10 Looking beyond disability to

NDIS profile

open employment doors

Technology Information and resources Review

14 Trailblazing for indigenous youth with disability

24 Celebrating our 50th anniversary

Legal rights

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 Celebrating 50 Years: 1967â&#x2C6;&#x2019;2017

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

Editor Fiona Jackson

Designer Shauna Milani

Proofreader Rosemary Gillespie

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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 PETER PERRY

Celebrating 50 Years: 1967−2017

Our wonderful, hard-working organisation will be here as long as it’s needed.

Fighting fit AT FIFTY As this is the first issue of our magazine for 2017, our 50th year, I’d like to let you know about our upcoming plans and the types of events and activities that we’ll be arranging to mark this significant milestone.

had to precisely state what SCIA might look like in 10 or 20 years’ time, I would find that very difficult, but it might consist of some of the following elements:

2. D epictions of the history of SCIA in various formats, including documents, photos, videos, and online.

▶ T echnology will continue to transform our society and the lives of people living with a disability in ways we haven’t even begun to imagine.

national presence for SCIA. This ▶ A is already the case, in that we have It’s unusual for any organisation to operations in every mainland state capital successfully exist for 50 years, especially city. However, we still only connect with these days. As the pace of life and society approximately 1 in 10 of the people living becomes ever more frenetic, we’ve decided with a spinal cord injury in Australia. This during the course of the next twelve months is up from 1 in 50 just ten years ago, but it to stop, reflect, and celebrate the fact that still needs to improve. an organisation that was started by a group of young men at Prince Henry Hospital in ▶ Much more emphasis on the more fulfilling Sydney’s Little Bay in 1967, has grown to and outward looking aspects of people’s be a national social enterprise, employing lives, rather than just the basics of daily around 150 people and creating significant living. With the successful implementation social impact by providing life-changing of the National Disability Insurance services to more than 1,000 people Scheme and the National Injury Insurance every year. Scheme having been achieved by about 2022, many people will be looking to Our 50th anniversary celebrations will leverage their new found independence in share the common themes of thanking our more and more creative ways. members for their support, showcasing how far the organisation has come since those ▶ Collaboration will be much more faraway days of 1967, and looking to the important. No organisation or individual future. It will focus on five key areas: will be able to thrive by working alone, and opportunities for working 1. A range of activities around the country, together will proliferate in a much more including forums, morning teas, and connected world. other events.

3. A dditional information in accord about the organisation’s past and its 50th anniversary celebrations, including a bumper issue late in the year. 4. V arious special events throughout the calendar, involving many of our partner organisations. 5. A gala dinner on Friday 8 September, to be held at Sydney’s Royal Randwick Ballroom, which is only about 10km from where our organisation was formed on 4 September 1967. Apart from looking back and celebrating where we have come from, this year will most definitely be about where our organisation is heading. If I 2

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▶ C ommunication and interaction with like-minded people across the globe will grow, and national borders will be less of a barrier to the sharing of ideas and the dissemination of best practice around the world. Our wonderful, hard-working organisation will be here as long as it’s needed. If we could shut our doors tomorrow, because everyone living with a spinal cord injury or similar disability had the same opportunities as the rest of the population, then we would have done our job. Unfortunately, or fortunately, depending on your perspective, I suspect we will be here for a few more years to come. ▪

JOAN HUME FROM THE PRESIDENT

Leading the charge FOR CHANGE It’s a little ironic that I write this from a hospital bed in a spinal unit that in 1967, the year Spinal Cord Injuries Australia (SCIA) was founded, didn’t even exist. Our organisation began from a back room at Prince Henry Hospital, where a group of young men with spinal cord injury (SCI) anxiously contemplated a very uncertain future. From those tentative beginnings grew an organisation whose depth of influence, breadth of vision and level of accomplishment was, back then, the stuff of dreams.

conditions that our physiotherapy sessions were conducted between parallel bars located outside the cottages, on a public thoroughfare. To compound the humiliation, we were dressed in hospital pyjamas, exposed to the general public.

Those young men felt abandoned by an unenlightened system that didn’t know how to conceive of their future beyond hospital, let alone one which saw them achieving a fulfilling and active life in the community. The former Disability Discrimination Commissioner, Graeme Innes, eloquently described this attitude as the “soft bigotry of low expectations.” I would go even further and say that for those young men there were no expectations, apart from an inevitable early death from complications due to infections or neglect.

As I reflect on the past, and the change that has occurred over the past 50 years in all aspects of spinal cord injury – including care and management in the acute phase and social integration after leaving hospital – I am struck by how important SCIA has been in playing such a significant role in fearlessly pushing the boundaries and setting the highest possible standards for dignity, independence and human rights for people with SCI.

These appalling conditions have today been replaced by modern facilities, including a wellequipped gym, with state of the art machinery for exercise that enhances strength and the restoration of function. And at least the toilets are now wheelchair accessible!

I am very proud to have been a part of this organisation for 40 years and am both energised and excited by our 50th anniversary. We want you, SCIA’s members, to And now, some 50 years later, I find myself in the spinal unit at Prince of Wales Hospital, own the anniversary and celebrate it with us, participate in the events and have a ball! contemplating this significant anniversary. I keep thinking of the Kev Carmody and A couple of weeks ago I had a spectacular Paul Kelly song From Little Things Big Things fall from my powerchair in Walsh Bay, in Grow, which tells the story of indigenous Sydney’s theatre precinct. The wheelchair man Vincent Lingiari’s fight for his people’s tipped sideways over a threshold not completely flush with the pavement, resulting traditional lands. In 1967, the very same year that Vincent Lingiari was petitioning the in a fractured knee and a smashed wrist. Governor General for the right to his people’s Today’s spinal unit is a universe away land, we in the disability community were from the spinal unit at Royal North Shore also starting to fight. We, too, were seen as Hospital to which I was admitted 45 years standing not a chance of a cinder in snow ago. In 1971, it consisted of five workman’s (as Kelly sings) in terms of returning to the cottages converted into a semblance community and living fulfilling lives. But by of medical wards, including a men’s banding together and creating this wonderful ward, a women’s ward and sections for organisation, we’ve proved from little things physiotherapy, occupational therapy big things grow to be more than true. and rehabilitation. This year on our 50th anniversary, let’s The toilet and bathroom facilities were crude reflect on our achievements and celebrate and primitive. Australia didn’t have proper how far we have come and where we are access design standards then; they were going next – from little things, to big still a decade away. So cramped were the things, to even greater things. ▪

Celebrating 50 Years: 1967−2017

We want you, SCIA’s members, to own the anniversary and celebrate it with us, participate in the events and have a ball!

NEWS

Slow start into insurance scheme The latest quarterly report issued by the National Disability Insurance Agency (the Agency) shows that the number of new participants entering the scheme is well down on expected targets due mainly to ongoing online portal problems experienced by both participants and service providers. Since July 1, 2016 some 7,440 new participants have received an approved plan, well down on the original target of 20,264 set for the September quarter.

Funding for Project Edge gets a $3 million head start A major five-year donation from the Neilson Foundation has been pledged in support of spinal cord injury research. The donation will be a major boost in establishing Project Edge. Project Edge, launched in September 2016, will see the introduction of a five-year, clinical research program in neuromodulation.

There are now 37,721 participants with an approved plan in the scheme. According to CEO, David Bowen, the Agency has set an aggressive recovery plan to get back on track to meet the original bilateral targets of an additional 38,000 participants by the end of the December quarter 2016.

off as they wait for their geographic area to transition into the scheme, it’s recommended that you contact the Agency and ask for an access determination. The newly released fact sheet, Developing Your First NDIS Plan, states “You can apply to enter the NDIS To achieve this would have required a six months prior to the Scheme rolling rapid increase in plan approvals leading up out in your area.” It’s certainly worth to Christmas. Anecdotally, there has been testing this for anyone approaching 65 some disquiet with the planning process, years of age. with many consultations conducted over the phone and evidence of inconsistency Backing up this information, David with support approved in plans. Spinal Bowen acknowledged in a recent Senate Cord Injuries Australia recommends those Estimates hearing that “a person can transitioning to the new scheme ask for make an access determination pretty a face-to-face meeting with an Agency much at any time and the Agency is planner if they are not happy with the required to determine that within 21 support they are receiving through Local days.” Area Coordinators. You can access the above fact sheet by For anyone worried about reaching visiting the following link: the 65-year-old age eligibility cuthttp://bit.ly/2gTT9pd

Likened to using gentle currents of electricity to wake up the spinal cord, neuromodulation is showing remarkable results in returning life-changing feeling and function to those with spinal cord injury – including unassisted standing, assisted walking, regaining of bladder and bowel control, improved sexual, autonomic and cardiovascular function and most recently, the return of some hand function in patients with quadriplegia. The Neilson Foundation has generously donated $1 million, and pledged a further $2 million over four years to further this vital research. The $3 million total donation represents approximately one quarter of the project’s $12 million budget.

Western Australia going it alone on the NDIS Western Australia (WA) has reached an agreement with the federal government over who will run its disability services. WA will control its own nationally consistent National Disability Insurance Scheme (NDIS) and administer the scheme from Perth.

Commonwealth and WA Governments were equally committed to national consistency on key elements of the NDIS such as choice and control, and the Commonwealth is open to a locally-administered model run by the WA Government.

“While it remains the Commonwealth’s strong preference for WA to join the NDIS on a similar basis to other states and territories, I acknowledge WA’s firm commitment to a WA-delivered model that This decision means that WA-managed builds on WA’s existing disability service NDIS will roll out from 1 July 2017, a full system,” Mr Porter said. year later than the scheme started rolling “The people of Western Australia deserve out in the rest of the country. an NDIS that is effective, sustainable and During negotiations WA stood its ground, insisting its disability system was cheaper and better for people needing support.

Federal Minister for Social Services, Christian Porter, said the 4

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nationally consistent. The Commonwealth is willing to consider a locally-run NDIS that

incorporates the current WA disability system.” “The Commonwealth has stipulated 11 clear conditions that must be met in a WA-administered scheme, and the WA Government has agreed to those parameters.”

NEWS

Accessible exercise for Adelaide, Lismore and Canberra To celebrate the opening of the Adelaide NeuroMoves gym in 2016, an open day was held in December. People with physical and neurological disabilities and professionals working in the sector witnessed the positive impact exercise can have for someone with a physical disability. Zofia Nowak, Director of National Disability Insurance Scheme Reform, was the special guest speaker and officially opened the gym for business. The Adelaide gym is the latest NeuroMoves facility to open, with Lismore and Canberra locations to open in 2017. The expansion into Lismore has been supported by the newly launched icare Foundation and the Newcastle Permanent Charitable Foundation. One of icare Foundation’s first projects is their partnership with Spinal Cord Injuries Australia (SCIA) to fund a new facility giving seriously injured people in Lismore access to NeuroMoves, with the potential to also expand to other regional areas. The icare Foundation is investing $100 million over the next five years in an initiative aimed at preventing injury and improving the wellbeing of people who are injured at work or on the road. NeuroMoves’ expansion to the ACT is thanks to the ACT government, that has

2017 is an exciting year as we reach the milestone of our 50th birthday. To celebrate SCIA has created a new logo for the year. We have used the colour gold to signify 50 years of supporting people with spinal cord injury and similar disabilities. NeuroMoves client Hayley at the opening of the Adelaide gym.

committed $300,000 to the program, and a generous grant from the John James Foundation. A huge thank you also goes to all our Canberra clients and supporters in Canberra who helped lobby for a local gym. The impact NeuroMoves has on its clients can be life changing. Hayley is 17 and attends the Adelaide gym. “At NeuroMoves, I’m working on improving my strength so I can do more for myself, like transfer in and out of my wheelchair. I’ve already come so far and I’m much more confident and independent,” says Hayley.

Throughout the year we will be celebrating with various activities, including profiles of significant people in accord, a bumper issue of the magazine in winter and a special dinner held later in the year. We hope you will get involved where you can and help us commemorate and celebrate the history of SCIA, with a clear view of a bright future.

For more information about NeuroMoves contact us on info@scia.org.au or 1800 819 775.

Google Maps rolls out wheelchair accessible locations feature In the United States, Google Maps has become more wheelchair friendly by launching a new feature that lists whether a location is wheelchair accessible.

Regular chat service launched

The accessibility information is sourced from Google’s Local Guides program, which asks users of Google Maps to answer questions about the places they visit, like accessibility.

SCIA’s recently launched Regular Chat service is one way that we connect with our clients and members. We can contact you regularly to check-in, link you to other services and provide ongoing support when and if you need it.

A place’s wheelchair accessibility is displayed as an amenity in Google Maps. Not every place has its accessibility listed in the Google Maps app because the feature relies on users submitting data. However, the list will

Some people use our Regular Chat service to focus on personal goals and accountability, and to celebrate their successes. If you would like to access this free service, email info@scia.org.au or phone 1800 819 775.

grow as more people use this function and submit accessibility data. Google expects to roll this feature out worldwide in the future.

www.scia.org.au 5

NEWS

Accessible travel options now a reality Whilst driving or taking a taxi might be the most convenient transport option currently available to people with a disability, the choices are increasing. Even big companies are starting to make their services accessible. Australia’s first and largest carshare provider GoGet has an accessible car for hire at the Royal North Shore Hospital. The Kia Carnival is an eight-seat vehicle, equipped with a single wheelchair rear entry with a hydraulic floor. It can accommodate a wide range of wheelchairs. “This is about giving new freedom to people who need it,” said Tristan Sender, CEO of GoGet carshare at the launch of the vehicle earlier this year.

Greg Killeen trialling the wheelchair accessible vehicle from Hertz.

“We’re proud to be one of the only car vehicle rental services in Australia to offer wheelchair accessible vehicles for our customers. We hope that this move will give people with disability more opportunities to travel freely and continue to enjoy Australia’s scenic locations,” said Damien Shaw, Country Manager, Hertz Australia. Greg Killeen, who has quadriplegia, has tested the vehicle. “The freedom to just get up and go and travel with ease is one of the most keenly felt losses for people who acquire a spinal cord injury. It’s fantastic that Hertz has introduced this fleet of accessible vehicles. It means people with disability using mobility aids can easily go travelling with family and friends, just like anyone else. By taking the needs of people with disability into account Hertz is making our society more inclusive and equitable.”

Hertz has similarly launched ten new wheelchair accessible rental vehicles in Sydney, Melbourne, Brisbane and the Gold Coast. The five-door vehicles provide Excitingly, an Uber wheelchair access for people with disability using accessible vehicle trial is launching in mobility aids via the rear door and seats Newcastle, NSW. five other ambulant passengers.

This service is currently available in other countries and is called UberWAV. It gives people with accessible vehicles the opportunity to become an Uber driver, earn flexible income and increase transport options for wheelchair users. To opt in for news about the service, download the Uber app at www.uber.com/ app, create a free Uber account and enter the code AUSWAV in the payment section of the menu. The Australian trial of UberWAV comes quickly after the launch of UberAssist that can be used by people with a folding wheelchair, walking aid or collapsible scooter.

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SCIA members can save money on their car insurance

But don’t just take our word for it… I was shocked to discover that my insurer had suddenly stopped covering the full value my disability conversions. I decided to shop around but found that most bigname insurers weren’t willing to fully insure me because my conversions cost over $30,000. I was at my whit’s end, until I found Blue Badge Insurance. They really took the time to understand my needs.

I decided to call Blue Badge Insurance to see what they were all about – I had no intention of changing insurance providers. I really tested their knowledge of disability conversions and exactly how their policy covers them. I was impressed to find out that my conversions could be covered for an agreed value, giving me peace of mind that I would not be left out of pocket if my car is written off.

I was so pleased to find out that their policy protects the total value of my conversions, not just a portion of the replacement costs. You don’t have to pay hefty premiums with the big-name companies for subpar cover. If you have a disability converted vehicle, I recommend calling Blue Badge Insurance.

I was also impressed to find out Blue Badge’s policy cost less than what I was paying without compromising on quality. This prompted me to also get a quote for my wife’s car and I was thrilled to hear they offer multi-policy discounts – so I quickly went from a sceptic to a very happy multiple policy holder!

John, SCIA Member since 2010 Owner of a Wheelchair Accessible Vehicle

Chris, SCIA Member since 2006 Owner of Two Cars Fitted with Hand Controls

My car is fitted with $75,000 worth of conversions. My previous insurer was only covering about half the cost of my conversions – so if my car was written off, I could be tens of thousands of dollars out of pocket. It was terrifying! I had seen Blue Badge Insurance in Accord Magazine and decided to give them a call. I was really impressed with their service. They helped me determine the value of my conversions to make sure that I was fully covered. Experiencing first-hand the quality of cover they offer, I enquired about their Home and Contents and Wheelchair Insurance policies. All their products impressed me so I decided to take advantage of their multi-policy discounts and move all my insurance to them. John, SCIA Member since 1983 Owner of a Drive from Wheelchair Car

Call Blue Badge on 1300 304 802 to find out how much you can save ^ Discounts for the Blue Badge Insurance Comprehensive Motor Vehicle Insurance will be applied to the base vehicle rates subject to the customer holding a permanent Disability Parking Permit and/or the vehicle has been converted for use by a driver or passengers that have a disability. The discounts do not apply to the Blue Badge Roadside Assistance Optional Benefit. Underwriting criteria will be applied to the consideration of the risk. Additional excesses will apply to drivers under 25 or those drivers who have held a full Australian drivers licence for less than 2 years. This offer may be withdrawn at any time. Consider the PDS at www.BlueBadgeInsurance.com.au to decide if the product is right for you. Blue Badge Insurance Australia Pty Ltd ABN 59 162 783 306 (A.R. No. 438547) is an Authorised Representative of Insurance Logic. Pty Ltd ABN 44 002 859 252 (AFS Licence No 237633) and The Hollard Insurance Company Pty Ltd ABN 78 090 584 473 (AFS Licence No 241436).

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FUNDRAISING

Partnership brings products to you As mentioned, SCIA has formed a long term partnership with the Independent Living Specialists (ILS).

New member benefits from our partners unveiled Independent Living Specialists (ILS) has become Spinal Cord Injuries Australia’s (SCIA) latest partner. They are one of Australia’s largest providers of home care equipment and are a leading provider of mobility and seating equipment, specialising in scripted power and manual wheelchairs. SCIA members will be able to take advantage of 10% off their range of home care equipment and manual wheelchairs. For any purchase of a power chair SCIA members will also receive a free gift. We are also partnering with Revitalife, a leader in providing high quality therapeutic beds and therapeutic lift recliner chairs. SCIA members will be able to take advantage of 30% off the retail price across all products.

SCIA is excited to announce that in partnership with ILS, they will be rolling out clinics in regional areas of NSW so that more people can access and trial the latest homecare and mobility equipment and can be properly assessed by occupational therapists. The first clinic dates and locations are: Tamworth: 26 April, 23 May Port Macquarie: 27 April, 25 May Ballina: 23 March, 11 April, 16 May Bathurst: 18 May Clinics will be monthly in these areas and SCIA members will be able to book in times for a free assessment. For more information call SCIA on 1800 819 775

Trusts and foundations

Permobil, a longer term partner of SCIA has also just released a new member benefit of a free gift when purchasing certain items in their range. A big thank you to our partners for providing the vital support needed to operate our services and for offering such value to our members. Call our Customer Connect team on 1800 819 775 or info@scia.org.au to learn more about our partners and how you can claim these great benefits. The Wheels In Motion team at the Laneway Launch.

Thank you to State Trustees Australia Foundation for a generous grant of $9,872 to purchase new equipment for our NeuroMoves exercise therapy and fitness centre in Melbourne, Victoria. This equipment will allow the centre to introduce more specific exercises targeted to our clients’ needs.

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Smashing goals A big thank you to the organisers of the Central Southern Golf Association Gala Day that was held at Royal Military College (RMC) Golf Course, Canberra. $1,700 was raised from the gala raffle proceeds and RMC kindly donating their green fees. Eighty two women ventured out for the day and their support is helping bring our NeuroMoves program to Canberra. Another huge thank you goes to Emma Anderson who participated in this year’s Medibank Melbourne Marathon Festival as a first time marathon runner. Emma put in a phenomenal effort, finishing the course and smashing her fundraising goal of $1,000 to raise $1,345! Congratulations Emma! If you’d like to challenge yourself in 2017 or want to create a fundraising event to support SCIA, visit our community fundraising page for more details: www.scia.org.au/communityfundraising

Laneway Launch a success Following on from the success of their Rooftop Raiser in December 2015, five fundraisers from Melbourne – Matt Pierri, Will Kitchen, Nick Inge, Hugh McKenzie and Will Allen – now known as Wheels in Motion, put on another great event but this time down Melbourne’s Illicit Artists’ Laneway. Wheels in Motion was founded to improve the quality of life for people

Volunteer Vivienne at the golf gala day.

living with spinal cord injury in Australia and this event once again raised money for NeuroMoves Melbourne. With more than 300 people in attendance, they smashed their target and raised a whopping $45,000! Everyone here at SCIA is bowled over by their efforts and hugely grateful for all the time and hard work they put into organising such a successful event.

FUNDRAISING

Getting the wheels in motion Will Kitchen is one of the founders of Wheels in Motion, an organisation that aims to improve the quality of life for people living with spinal cord injury. Fiona Jackson speaks to Will Kitchen

Why did you decide to support Spinal Cord Injuries Australia (SCIA)? When one of our best friends, Matthew Pierri, sustained a spinal cord injury (SCI) playing school football, we all witnessed the massive impact it had on his life. His progress from when we first visited him at the Austin Hospital in Melbourne has been incredible, and no doubt will continue to be so. One of the activities Matt attributes his recovery to is SCIA’s NeuroMoves program (previously Walk On). When we decided to do our first fundraiser in 2015, NeuroMoves was an obvious choice to be the beneficiary. Matt was fortunate enough to be able to finance his own participation in the program, but many others can’t afford to do so. What event did you organise to support SCIA? Our first event was an afternoon event on 5 December 2015. It was by chance that a venue at a rooftop bar became available, and it was this that led to our organising a social event to raise money for SCIA. We coined it the Rooftop Raiser and with the help of 170 guests and corporate donations, we raised $18,000. Last year’s fundraiser on 3 December 2016 was the Laneway Launch and with the help of 300 guests and even more corporates becoming involved, we’re delighted to report we raised $45,000.

Laneway Launch, Melbourne

We managed to get our message across and our cause in front of a number of corporates and once they understood it, they were keen to become involved. Are there any tips you can give to anyone looking to organise a fundraising event for SCIA? Creating our corporate partnership proposal document was probably the most helpful move. It’s a brief document that told people all about us in a short, simple, but informative way.

What challenges did you need to overcome?

How did you engage corporates to help you?

This year’s event was a huge logistical challenge (marquees, toilets, food, alcohol, cleaning and more for 300 people). What will always be a challenge is getting corporate sponsorship. It’s very difficult to get your message in front of the right people at a company, and the charity dollar is hard won. Despite this, we had some very generous donations of services and finances from a range of entities.

We always engage first with companies who we have an immediate connection with, such as friends, family and employees. We also did a lot of cold calling and emailing and this proved to be very productive. We found that when we got our message across, people were generally very receptive and wanted to become involved. It is always the initial contact which is the hardest.

What were you hoping to achieve from your event, both financially and for attendees? This year was a massive success. The financial side was obvious. Equally important was the message that we got across at the event. We feel that this year our message was better received and had a much bigger educational impact. Rod Watson has an SCI and has benefitted from NeuroMoves, his speech was by far the highlight of the night. We’re all about raising money and changing perceptions, and having a fun time doing it. Would you encourage others to fundraise for SCIA? Yes, of course! It's been a wonderful journey for us to date. We wouldn't be raising money for SCIA if we didn't feel strongly about the great work they do, especially the NeuroMoves program, which dramatically improves the lives of those living with SCI. ■ www.scia.org.au 9

COVER

Looking beyond disability to open employment doors Words: Fiona Jackson

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inding employment in todayâ&#x20AC;&#x2122;s society is tough. Technological advancements have led to fewer roles in traditionally labourintensive sectors and more people than ever are completing tertiary education, which means that competition for skilled jobs has never been greater. Add having a disability to the mix and youâ&#x20AC;&#x2122;ll find that securing a job to match your skills and expertise can prove nigh-on impossible. So why is it harder for people with a disability to get a job, when studies such as the Disability Confidence Survey 2016 show almost 90% of employers engaging people with disability report benefits directly related to positive business outcomes? Everyone understands entering employment can lead to increased confidence, broader social networks, enhanced social skills and career development opportunities by gaining

COVER new work skills and knowledge. Although there have been improvements in antidiscrimination legislation, people with disability are still less likely to be working than other Australians, with no discernible reason why. The 2009 labour force participation rate for Australians with disability aged 15-64 was 54%, much lower than the 83% recorded for people without disability. According to the Department of Families, Housing, Community Services and Indigenous Affairs 2011 report, a priority outcome of the National Disability Strategy 20102020 is to “increase access to employment opportunities as a key to improving economic security and personal wellbeing for people with disability…”. Phat Ngo, Employment Services Manager of Spinal Cord Injuries Australia’s (SCIA) newly re-launched employment service, EmployAbility Australia, says the biggest employment challenge facing people with disability is encouraging prospective employers to look beyond it. He believes businesses need to see further than the potential challenges disability might bring, and focus instead on the ability of the person to competently handle the role.

Disability-related discrimination in the workplace includes: • Refusing to employ you after your disability is disclosed • Making a rude or negative comment about your disability • Not providing access to shared spaces, including meeting rooms, canteens or bathrooms • Overlooking you for promotion due to your disability rather than your ability. Disability discrimination is when a person with a disability is treated less favourably than a person without the disability in the same or similar circumstances. For example, it would be “direct disability discrimination” if an employee was unable to attend a work function because there was no access into the venue or access to the facilities inside. “Indirect disability discrimination” can be less obvious. It can happen when employers put in place conditions, requirements or practices that appear to treat everyone the same but that actually disadvantage some people because of their disability. An example of this could be an employer setting an earlier start time at work that isn’t practical or possible with scheduled personal care in the morning before leaving home.

15 key priority areas identified by the National Disability Insurance Scheme (NDIS) and it is expected the scheme will “I have conversations with job seekers who fund support such as the services offered by EmployAbility to assist participants are getting interviews but are not getting with employment. This essentially means beyond that. Part of my job is to help them understand and deal with the mental people will be able to specifically request employment support as part of their and emotional impact of that rejection, NDIS package. assisting them with building resilience through the job search process,’’ he says. The types of support available under “Society doesn’t recognise disability discrimination apart from when we hear from people who are suffering as a result of it. When I talk to jobseekers trying to secure employment, you get a real sense of it. I hear the frustration – probably not so much about the application process – it’s more likely to occur at interview stage. This is where discrimination kicks in because this is when a physical disability is visible and it often needs to be disclosed to ensure access to an interview.’’ This was certainly the case for Susan Wood, who’s employed at SCIA as a Communications and Media Co-ordinator. Susan wrote a personal blog about this topic that was originally published on The Mighty in October 2016 (republished on page 12 of accord). So what is being done to support people with disability who want to be in the workforce? Employment is one of the

the NDIS include:

• Assisting participants ineligible for Disability Employment Services (DES) or Job Services Australia (JSA) to build their skills and capacity for employment, as well as offering assistance to find and maintain work. • Personal care or assistance with transport where the participant requires these supports, regardless of the activity they are undertaking. • Assistive technology devices such as wheelchairs, personal communication devices or a hearing aid. • Supported employment, such as services offered by Australian Disability Enterprises. Employers and employment services are responsible for: • Making reasonable adjustments to

enable people with disability to access their workplace. • Employment specific aids and equipment, such as computers and modified desks. • Reasonable adjustments to buildings, such as the installation of ramps. •T ransportation for work activities, such as attending meetings or training. Mr Ngo explains EmployAbility assists jobseekers to find employment. “We conduct one to one sessions to conduct job searches, provide training on employment skills, support and advise on how to find and secure work and how to stay employed once placed.” The team also work with employers to ensure they are educated on how to support an employee with a disability as part of the employment process – and this is where EmployAbility can really add value. Their work helps reduce the number of hurdles disabled jobseekers need to overcome because the employer has actively chosen to employ someone with disability, and understands what this means for their business and their staff. Mr Ngo says from an employer’s perspective, people don’t openly talk continued ▶ www.scia.org.au

COVER ◀ continued from page 11 about discrimination – what you’ll hear from employers is the desire to help people with all types of disabilities, including those that are physical. “I think it’s the follow up that is a bit lacking and it can sometimes be a case of not putting their money where their mouth is. I often hear “We’re really keen to take people on, but …” he says. So, making it through the job interview stage to secure a role does appear to be a significant challenge facing people with a disability. However, recent statistics show that once employed, people with a disability make great long-term employees. According to the Disability Confidence Survey 2016, while businesses are willing to engage and are open to being inclusive, they don’t know what to do or what changes are required. The survey suggests that the current approach by business is generally passive, with many indicating they wait until being asked to engage before taking action in their own business. As the NDIS continues to roll-out across Australia, the current climate represents an excellent opportunity for businesses to take the first step in learning more about welcoming employees and customers with disability. With benefits ranging from gaining greater staff loyalty and satisfaction to improved productivity, businesses looking for a competitive edge will be well placed to consider the needs of people with disability in their planning. If you’re interested in learning more about EmployAbility and how you can prepare yourself to be job ready or would like to learn more about how you can employ people with disability, please contact us at info@scia.org.au or on 1800 819775. ■

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Susan’s story... M

y disability is called neonatal flaccid paraplegia. It came about due to a stroke I had while being born. Since I was three years old, my disability had me using braces and crutches to move around. Now I’m in a wheelchair full time. A week after my 16th birthday, I got my learner licence to start driving. I was so excited! On the day I got my licence, and figured out the best way to put my wheelchair in the passenger side and drive Susan in her workplace. myself to the shops, I felt one of the most liberating feelings I’d ever experienced. I thought from then on I would be able to disabled parking, but the state of disability get work easily, and moving to a different employment is unequivocally number one. house wouldn’t be a problem. I can only surmise that people are hesitant to hire someone with a disability because How naïve young Susan was with all it’s different to what they have encountered her positivity. The reality was much before. There are a lot of factors to harsher. Even when I’d nailed a phone consider when hiring someone with a interview, some employers would sit disability, but it doesn’t mean the employer back stunned when I came in for a facehas to feel obligated to take care of us. We to-face meeting. Others would force can look after ourselves if we have physical their receptionists to cancel interviews access and our (usually simple) needs for and ask me to wait for a call back to workplace access are met. reschedule as soon as I asked if there I believe countering this problem will was disabled access to their workplace. take some very blunt governmental Some employers hired me simply in policy changes, starting with building order to meet a quota. I began to search access. We can’t be hired somewhere we advertisements for places who specified “We are an equal opportunity employer” can’t get into. It further limits the already limited scope of opportunities. It will just because it felt safer to apply. take employers who are confident in our I’ve only had a handful of jobs, mostly in abilities as skilled workers. It’ll mean they admin, but that wasn’t due to disinterest. have to be confident we can climb a career When I turned 19, I decided I would go ladder. It will need the support of the up and down the Blue Mountains handing people who lead this country and those out my resume. Some people accepted it who are willing to stand up with us. It isn’t looking like they had a genuine interest, any good having one token person in a and others took it from me only out wheelchair at work and patting yourself of politeness. on the back for a job well done because you’ve met the equality quota for the A year passed and I felt defeated. I year. How long can you ignore 20% of the couldn’t physically do the most readily population, most of whom are willing and available jobs, like being a waitress or a bartender. At the end, I remember going able to work if only they were given an into a workplace and handing a resume to equal opportunity? a woman who looked a little awkwardly at We as disabled people also need to be me. Finally I said, “You won’t hire me, will fearless, because disability isn’t contained you? Is it because I’m in a wheelchair?” to one particular gender, ethnicity or She said “Yes”. At least she was honest. religious background – it affects everyone. If not for ourselves, then we must be For a very long time I worried about fearless for future generations who need whether I’d ever be hired again. It took three years to find the job I have now, two us to pave the way for them, and show that we are contributing members to society of which I spent actively looking. and we can make a difference. There are a few things that really irk Be fearless with us and for us. ■ me, like building access and the state of

CMY

FEATURE

Trailblazing for indigenous youth with disability Jake Briggs has packed a lot into his life, and despite challenges has achieved a great deal. Much of which is dedicated to helping others. Words: Susan Wood

Jake Briggs with wife Amy.

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FEATURE

ake Briggs’ life and perspective changed after a diving accident in a swimming pool, that he says turned everything upside down seven years ago. “Old doors close and new ones open eventually,” he says. “Before, I was a really productive, go-forward kind of person. After my accident, I knew that my limbs weren’t going to work the same way any more, so I had to utilise what I could to support myself and my wife Amy, and keep a roof over our heads,” he says. Jake talks proudly about Amy as his biggest supporter. They were high school sweethearts and have just celebrated three years of marriage and 15 years together. When Jake became a quadriplegic, their relationship had to change with it. He reflected on the realisation that he wouldn’t be able to physically fix things around the house or even give the same affection as someone who is able-bodied. “The injury doesn’t affect just the person who is in the chair, it’s a ripple effect. My wife, family and friends were all affected. The whole mechanics of life changed,” he says. Jake plays wheelchair rugby and slide guitar and is having a specialised rifle made for him to use at the shooting range. He believes spending time being social is the most important aspect of having a spinal cord injury. “Getting within the community, talking with people in chairs and having that common ground. Not just for me, but for my partner too. Talking with other partners has been really good.” Jake worked as a carpenter for Multiplex before his accident. He credits them for being very accommodating of his needs after his injury, giving him a new role at the same site he was already working on and the flexibility to work at the office and from home. “It was scary for them and scary for me,” he says. “I was in document control and moved into quantity surveying. I can’t praise them enough. They provided me with a mirror-image rig in my home to keep me up to par.” He believes that a flexible workplace for people with disability is an important aspect in increasing access to employment. He would like to see more employers accept that with a growing population of people with disabilities, people can work from home just as well as someone working from the office. “I’m not mucking around at home. I’m still contributing, and it works.” Today Jake works as a Corrections Advocacy Manager for the First Peoples Disability Network and as Chairman for the Aboriginal Disability Network of New South Wales. He is a very passionate advocate for indigenous equality and indigenous people with disabilities. Witnessing

Jake Briggs outside Parliament House, Canberra

inequality firsthand with people from all over the country, including the recent Royal Commission into Don Dale Youth Detention Centre in the Northern Territory, he attributes having a disability of his own, as well as sharing the same culture with the people going through the correctional system, to the success he has at work. “It’s been a real eye opener. There’s a stigma attached to having a disability itself and then for being indigenous. It’s like double the disability, in a sense.” Every Friday, Jake works with the Koori Court in Parramatta, assisting young people from 12 to 18 years old who have a disability and who are going through the correctional system. His role is to support them as much as possible at every step. Navigating the National Disability Insurance Scheme (NDIS) for people leaving correctional facilities is just one of the challenges Jake faces. The NDIS hasn’t rolled out to every area, so he does as much as possible to provide a smooth transition for young people as well as trying to break the systemic cycle that many cannot avoid. He stresses that it is important to have a legal system that is both fair and www.scia.org.au

FEATURE culturally sensitive to indigenous Australians. “The numbers are high. In Parramatta alone, three out of five people passing through Koori Court will have a disability,” he says. “Some of these kids are coming from remote communities in western New South Wales or south-west near Wagga Wagga and coming to a big city. It’s a culture shock for them and the system is under-resourced.” He also regularly attends United Nations conferences in Geneva and New York, communicating closely with other indigenous people with disabilities and says they learn a great deal from each other. “I have a great sense of accomplishment seeing how far the organisation has grown, from New South Wales to now being a national body.” Jake has high expectations for the NDIS. He’s currently in a rollout area and started receiving his own financial support, but it has been a journey into a system that he feels wasn’t entirely prepared to deal with complexities of numerous disabilities. He says some services weren’t included in his first draft NDIS plan due to the complex nature of his disability. Jake believes that if the Local

You want to be as honest as possible.... It’s about the person with a disability having a voice.

Area Coordinators were specialised in a particular disability things could have been different. “It’s about having more, not less. You want to be as honest as possible, but it makes it hard for people with disabilities to explain what they want and need when the Local Area Coordinators don’t have a great knowledge of the disability themselves. It’s about the person with a disability having a voice.” ■

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DAILY LIVING

Increasing independence in the heart of your home They say the kitchen is the heart of your home. However, for many individuals living in the community with a disability, it can often become an environment fraught with challenges and safety concerns. Stewart McDonagh, Manager, ILS Rehab, Occupational Therapist

f you are living with a disability and want to increase your independence in the kitchen, I would recommend consultating with an occupational therapist. They will work collaboratively with you to identify and increase your participation in meaningful activities all in the name of independence. They will assess your functional abilities and goals and assess your current environment to ensure your space can be made as safe and functional as possible. They will provide you with recommendations to enable you to work towards your goals; increasing meaningful participation in the heart of your home. The use of kitchen aids and/or adaptive technology may form part of these recommendations. There is a large range of kitchen aids available to assist people with a disability, including (but not limited to) people with reduced mobility, reduced strength and endurance, joint stiffness and pain, poor fine motor skills, tremors, and those with the use of only one hand. Some of the kitchen aids available today include:

A kettle tipper is designed to assist with pouring from any standard kettle with minimal effort or risk of spilling boiling water. When the handle is pushed gently forward, the platform pivots on its frame. The kettle tipper uses non-slip feet so that it cannot drop forward accidentally or fall back past the horizontal plane. This is ideal for people with reduced upper limb strength and endurance. A food preparation and cutting board is ideal for people who have difficulty gripping or who have the use of only one hand. A clamp is used to secure items such as tins, bowls, and food products. The stainless spikes hold vegetables for peeling and cutting. Four non-slip rubber feet prevent the board from moving. Suction pads are also provided so the food preparation board can be used on wet surfaces. “It’s forever inspiring how even in the simplest of

A V-shaped jar and bottlemoments, opener an that is embrace screwed underneath a shelf or table can with my wife changes be a useful and discreet tool for opening everything.” bottles and jars. This ideal for people with reduced grip strength and dexterity. 18 accord magazine

Mark “Wheelchair Junkie” Smith

“It’s forever inspiring how even in the simplest of moments, an embrace DAILY LIVING with my wife changes everything.”

“It’s forever inspiring how

Angled cutlery has shaped handles to assist those with restricted wrist or finger movements. The knife has a straight built-up handle with angled blade that allows cutting with a rocking action, while the forks and spoons have curved built-up handles that are comfortable to grip and require little wrist movement.

even in the simplest of moments, an embrace Mark “Wheelchair Junkie” Smith

with my wife changes everything.”

“It’s forever inspiring how

L-shaped knives have their blades set at an angle to minimise the wrist movement of the user. This is great for people with reduced wrist movement and dexterity as it allows the user to cut using a “It’smotor forever inspiring how cylindrical grip and with gross in theto simplest of movements. The handles are even designed counterbalance the weight ofmoments, the utensil. an embrace with my wife changes

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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 five 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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How we can help

The NSW Government amended the Life-Support Rebate (LSR) eligibility policy to include people with The Spinal Cord Injuries Australia quadriplegia who use power wheelchairs, Policy and Advocacy Service (SCIA but this didn’t extend to users with P&A) provides individual and systemic paraplegia. The LSR is a financial benefit advocacy that aims to address issues to offset the cost of electricity used to adversely affecting people with disability, power, or charge the batteries of, essential their family and carers. The SCIA P&A equipment such as ventilators, oxygen receives funding from the National concentrators, a positive airways pressure Disability Advocacy Program (NDAP), device (CPAP or PAP machine), enteral that is administered by the Federal feeding, and more. SCIA P&A has raised Department of Social Services (DSS). the non-inclusion of paraplegia with both Jillian Skinner MP, then NSW Minister SCIA P&A uses different methods to for Health, and Anthony Roberts MP, try to address issues and barriers depending on whether it is supporting a Minister for Industry, Resources and person with disability with an individual Energy. Unfortunately, the request was rejected and SCIA has been added as a advocacy issue, or when undertaking stakeholder to be consulted during the systemic advocacy to resolve issues next LSR review. affecting many or all people with disability. The Tasmanian Government recently Individual advocacy services are usually requested by people with disability who have unsuccessfully tried to resolve one or more issues and want the assistance of an advocate. The main concerns they have include personal care and support services, accommodation and housing, assistive technology programs and services, health and medical services and facilities, Centrelink benefits and allowances or access to, or discrimination in, the workplace, education and training services and facilities. We discuss the issue and its impact with the client to understand what their concerns are and what actions are needed to resolve them quickly and amicably. Sometimes, we can have the issue fixed by sending a letter or email to the appropriate person or department, or it may take one or more meetings with relevant stakeholders to negotiate an appropriate outcome. Additionally, the successful resolution of an individual advocacy issue may well have a systemic benefit for other people with disability.

amended its Taxi Subsidy Scheme (TSS) Smartcard eligibility to exclude people with disability transitioning to the National Disability Insurance Scheme (NDIS). The TSS Smartcard provides a subsidy of the taxi fare to assist with the cost of the taxi for those unable to easily or independently use public transport.

The NDIS can provide a transport allowance (which has three funding levels depending on the NDIS participant’s planned activities) that replaces the Centrelink Mobility Allowance (provided to people undertaking volunteering, education, training or employment for a minimum of eight hours per week). However, there will be many people with disability transitioning to the NDIS who will be financially worse off without access to the TSS Smartcard if they require taxis for their personal, family or social events, health or medical reasons, because they will have to pay 100% of the taxi fare.

Systemic advocacy issues can arise when companies, governments or government departments change their policies or procedures, services and facilities. This can result in people with disability, their families and carers being unfairly disadvantaged, financially or otherwise.

As the NDIS is expected to provide service uniformity across Australia, the Tasmanian Government’s taxi policy amendment hasn’t been applied elsewhere, and it isn’t in the spirit of the NDIS. It’s a prime example of cost shifting its state responsibility to the NDIS. SCIA P&A has written to Tasmania’s Infrastructure Minister, Rene Hidding MP, requesting the Tasmanian Government reverse its decision and her response will be published in the next issue of accord.

Some recent examples include:

SCIA P&A uses a variety of systemic

Squeaky Wheel

POLICY & ADVOCACY

advocacy methods to try to address issues that have an adverse effect on people with disability. Apart from writing directly to Ministers or departmental heads to highlight our concerns and request issues be removed or amended, SCIA P&A has also undertaken systemic campaigns. Action has included asking people to submit letters to Ministers and Shadow Ministers seeking their support to address a particular issue, with the SCIA website providing template letters and contact details which people with disability can access and send in at the click of a button. For example, this process was used when seeking an increase in the subsidy of the NSW Taxi Transport Subsidy Scheme (TTSS) and trying to expand GST to include goods and services purchased by people with disability. The NSW TTSS was eventually increased from $30 to $60. However, the GST expansion was unsuccessful. SCIA P&A also makes good use of the annual NSW Budget Estimates Hearings held in NSW Parliament House, where every Minister for each portfolio presents before a General-Purpose Standing Committee (GPSC) in the NSW Upper House (Legislative Council). The hearings give any individual or organisation an opportunity to get in contact with any of the GPSC members to request they ask the Minister questions or place questions on notice. Any unanswered questions during the hearings can be taken on notice and must be replied to within 21 days. Using the hearings in this way has been quite successful in obtaining quick answers on specific issues instead of waiting weeks or months to get a written response from a Minister or Shadow Minister. It’s a great use of the democratic process and members of the public are welcome to attend. SCIA P&A has also worked in collaboration with other disability and community organisations, including members of the Assistive Technology Community Alliance of NSW (ATCAN). Their main focus was to lobby the NSW Ministry of Health to increase the EnableNSW Aids and Equipment Program (AEP) budget and amend the inequitable co-payment policy between the AEP and the Prosthetic Limb Service (PLS). People accessing the EnableNSW AEP have a higher co-payment and are assessed against three income bands. ATCAN organised a delegation to meet

with the NSW Minister for Health, to highlight these issues. Despite the AEP budget increasing over time, the inequitable co-payment remains. Although many people with disability will be transitioning to the NDIS, so will access assistive technology, ineligible people with disability will be reliant on the EnableNSW AEP and be subjected to this inequitable co-payment. This will also affect some NDIS ineligible people over the age of 65.

It's a great use of the democratic process and members of the public are welcome to attend.

SCIA P&A is a member of a number of government and non-government advisory committees. These committees consult with members and provide the opportunity to find out about changes to policies, services and programs. Our involvement helps us to plan appropriate advocacy to try to address any resulting adverse issues. Some of the advisory committees include: • NSW Taxi Council Wheelchair Accessible Taxi Advisory Committee • NSW Accessible Transport Advisory Committee (ATAC) • NSW Lifetime Care and Support Authority Reference Group • NSW Home Mods Advisory Committee • NSW Health State Spinal Cord Injury Services Committee www.scia.org.au 21

POLICY & ADVOCACY

Squeaky Wheel

SCIA P&A has been invited on to a number of ad hoc committees to review policies and procedures. These include: • icare Committee, to review its attendant care policies and procedures • NSW Family and Community Services (FACS) review of the Disability and Inclusion Action Plan framework •N SW Ombudsman Neglect and Abuse Forum • ILC Commissioning Framework Forum • ILC Information Kit Development Workshop • Central and Eastern Sydney Primary Health Network NDIS Impact - Needs and Planning Project Stakeholder Workshops • Sydney Opera House Access Masterplan SCIA P&A has also lodged a number of submissions to different policy reviews, including: • ILC Commissioning Framework Review • NSW Lifetime Care and Support Guidelines on Attendant Care Services Review

• NSW Point to Point Transport Review Task Force • NDIS Quality and Safeguarding Framework Review • National Disability Advocacy Framework Review • National Disability Advocacy Program Review • Mobility Allowance Transition to the NDIS Bill 2016 The NDAP funding for SCIA P&A services is only provided until 30 June, 2018, and SCIA is currently awaiting the final report from the DSS NDAP review. The DSS is aware that it’s impractical for people with disability to include services such as advocacy, information and peer support in their NDIS plans and be allocated a funding package for them. Because these services are only required on an as-needed basis. SCIA anticipates that the NDAP review will continue to provide, and hopefully increase, the NDAP budget to ensure people with disability have access to appropriate and timely advocacy services when needed. ■

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50th ANNIVERSARY SPECIAL

Where it all began â&#x20AC;&#x201C; the birth of the Disability Rights Movement in Australia Joan Hume, President, Spinal Cord Injuries Australia

o you remember a time whenâ&#x20AC;Ś the only form of public transport for people with severe disabilities was the ambulance? Most children with disabilities were educated (if at all) away from their families, local communities and friends in segregated, isolated schools and, sometimes, even in hospitals? Deaf children had their hands tied together to stop them signing, forcing them to learn to communicate orally?

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Married women with disabilities were forbidden access to rehabilitation from the Commonwealth Rehabilitation Service because it was assumed they didnâ&#x20AC;&#x2122;t need to work and that their husbands would financially support and look after them. Forever? Selling pens at a railway station or shoving unspeakable objects into cardboard boxes in a sheltered workshop for a couple of dollars a week was seen as a smart career move?

50th ANNIVERSARY SPECIAL

Being pushed around in a wheelbarrow including unionism and workers’ rights, was the only way a child with polio from a black civil and gay equal rights, and poor rural background could get about? feminism, to name but a few. A beauty queen with a perfect face, perfect speech and a perfect body was chosen every year to represent, raise funds for and speak on behalf of all Australians with cerebral palsy? No woman with cerebral palsy was chosen to represent her organisation, except in a pitiful photo on charity boxes in milk bars? You turned up to your local cinema/ restaurant/church/footy match in a wheelchair or with your assistance dog, only to be forbidden entry because you were a fire hazard? Or the sight of you was offensive to other patrons, or turned them off their food, or there were too many steps, or dogs were banned because they were too noisy or believed to be a health risk? Or to hear the same lecture, ad nauseum: we don’t need to provide access because nobody with a disability ever comes here, anyway. Right? Not too long ago. And I haven’t even touched on more complex bioethical issues such as enforced sterilisation of disabled girls, late term abortions for disabilities such as Down syndrome or short stature, deliberate “medical” killings of newborns or euthanasia on the grounds of disability alone. All of these examples come from the lives of people with disabilities and have occurred within the last 50 years; some within the last 30 years. Some even continue today. Revolting isn’t it? Enough to start a rebellion.

We were fed up with a multitude of professionals who, of course, always knew better. Who bullied us, spoke for us, told us what they thought we needed and how best to do things. We were denied the strength of our own voice and the powerful truths of the lives we’d lived; we were denied our own embodied experiences of disability. We wanted things to change. People with Disabilities Australia began humbly in 1980, and was originally known as the Union of Handicapped People. A meeting held at the Queen Elizabeth II Rehabiliation Centre in May that same year was chaired by the late Ben Meads. It called for the establishment of an organisation that crossed disability lines and which united all people with all disabilities, regardless of their medical diagnosis, level of intellectual development or psychiatric condition.

So the birth of a new organisation – which took a radically different perspective relating to the status and capabilities of all people with disabilities, promoting a united approach to advocating for political change – was electrifying.

This historic meeting was the first of its kind in New South Wales and marked the beginning of change across Australia. Although the forthcoming 1981 International Year of Disabled Persons was the catalyst, the strong smell of insurrection had been in the air for a least a decade.

Prior to this time, the majority of existing disability organisations had focused on one particular medical condition or a charitable approach to disability. But all were competing for the public and private dollar, mainly to provide specific The Disabilities Rights Movement in services. All very laudable. Many such Australia was born from the passion, bodies still operate in this way and do so the anguish, the outrage, the despair very well. But very few, with the possible and the explosion of frustration caused exception of the Australian Quadriplegic by centuries of exclusion, humiliation, Association (AQA, now Spinal Cord prejudice, poverty, disempowerment, Inuries Australia), had any focus on pity, condescension, charity, segregation, oppression and neglect so often experienced advocacy, social change and political activism spearheaded by and for people by people living with disabilities. with disabilities. It was a movement whose time had come, So the birth of a new organisation – and its stirrings were felt world-wide. which took a radically different The United Nations inaugurated the perspective relating to the status and Declaration on the Rights of Disabled capabilities of all people with disabilities, Persons in 1975, but we were also promoting a united approach to stimulated and inspired by other great advocating for political change – was 20th century political, social justice and electrifying. And exhilarating. liberation movements preceding ours, www.scia.org.au 25

50th ANNIVERSARY SPECIAL A wonderful adventure of which I was privileged to be a part. But no sooner had this new voice of dissent with its challenge to the status quo begun to assert itself, when there came an offended squawk from an unexpected source. “You’ve stolen our name”, cried Barrie Unsworth, then Secretary of the NSW Labor Council and later NSW Premier. He claimed, whether from guilt or ignorance, that we’d usurped the name of “union”. It had to go or he’d sue. And thus, we became known as the Handicapped Persons Alliance. The fruits of the International Year of Disabled Persons (IYDP) were bountiful, both in Australia and around the world. Among many other achievements, those 12 special months saw the birth of Disabled People’s International at its first World Congress in Singapore in December 1981. Additionally, the NSW IYDP Secretariat funded the Disabled Persons’ Resource Centre, The Handicapped Persons’ Alliance and oversaw the formation of regional councils based on the IYDP Committees centred in major rural and regional centres. These disparate groups all merged under the umbrella of Disabled Peoples International (NSW) in 1984. In its first decade, the disability rights movement collectively achieved many things. Firstly and most critically, was the united, proud and increasingly insistent voice of people with disabilities. Secondly, was evidence of our growing skills in self advocacy, lobbying, organisational management and informed, articulate debate. We raised issues or complained loudly in letters to newspapers, to politicians or to anywhere else that was relevant. Invitations of our members to participate on government advisory bodies followed and we played a more decisive role in our local communities and nongovernment organisations. Thirdly, we took to the streets, where we demonstrated noisily with placards and megaphones. The first demonstration I ever attended in a wheelchair was in 1979, protesting at the opening of the inaccessible Eastern Suburbs Railway. Inspired by Genni Batterham, it was Spinal Cord Injuries Australia (formerly Australian Quadriplegic Association (AQA)) who organised the wheelchair brigade of placard wavers. We were abused, jostled and screamed at. “Go back to your nursing homes, you’re 26 accord magazine

Joan Hume, Genni Batterham and other protestors with Premier Neville Wran at the opening of the inaccessible Eastern Suburbs Railway in 1979.

spoiling the view!” An embarrassed Premier Neville Wran promised action and, two years later, introduced wheelchair accessible taxis and the Taxi Transport Subsidy Scheme, which gradually spread to other states. So, direct action can bring results. We also achieved: • The introduction of a national aids and appliances scheme, now administered by individual states. • The Attendant Care Scheme, allowing people with disabilities to control their own personal care support. • Amendments to various state antidiscrimination laws to include disability as grounds for complaint, culminating in the Commonwealth Disability Discrimination Act, 1992. • Improvements in access to public buildings, spaces and transport, including air travel. • Expansion of the Home and Community Care Programme to include younger people with disabilities. • Improved equality of access to education, especially in the post high school and higher education sectors. These are merely some of our earlier triumphs. But there is so much more to be done. We are still striving for a more just and equal society. We still struggle against continued stigma, exclusion and poorer services in all aspects of our lives – whether that be in trying to get a job or merely wanting to sit next to our partner at the Opera House. But we are much stronger now, we are not invisible anymore and we now have avenues of complaint and redress which weren’t available a generation ago. People with Disabilities Australia, stand up and take a well-deserved bow. ■

*This is an edited version of a speech originally written for the 30th anniversary of People with Disability Australia Inc.

50th ANNIVERSARY SPECIAL

Legacy of love In his lifetime, David Brice had a long standing involvement with Spinal Cord Injuries Australia (SCIA) as an employee, Board member and President. A tireless campaigner instrumental in bringing about a wide range of support services to help wheelchair users lead fulfilling and independent lives, David was married to an amazing woman, Trish. Shirley Carpenter spoke to Trish about the early days of SCIA, her love for David and how this legacy of love continues. What is your connection with SCIA? My connection with SCIA came through my late husband, David Brice, who was the Senior Advocacy Officer at SCIA when I met him in 1993. We were married in January 1997 at the Coast Chapel at Prince Henry Hospital. How did David sustain his injury? David’s paralysis was due to an autoimmune condition, Guillain-Barre Syndrome (GBS) that affects the peripheral nerves of the body, causing weakness and paralysis. David had six attacks, of varying severity, from the age of 14 years to the last one in 2012. In the most severe attacks, David was totally paralysed except for the use of one muscle in his left little finger. Each attack required admission to an intensive care unit in hospital and rehabilitation. Complications from his fourth tracheostomy caused his death in October, 2012. Where did David receive treatment? David was a patient in the spinal ward at Prince Henry in the late 70s and early 80s and this led to his first association with SCIA. Did you meet any of the SCIA founders? I met Warren Mowbray at social functions and Trevor Annetts of course, who is such a significant link to the early history of SCIA. I met Jim McGrath at the closing of Ashton House. I met Bob Wheeler and also Brian Newton, who was admired by David and many others as a very resilient person. What is your connection with SCIA today? I am a member of SCIA and keep informed of the latest developments in the organisation. I feel it is very important to me, especially since David’s death to

keep in the loop as my way of honouring David’s legacy in the disability sector. Advocacy for people with physical disabilities was David’s focus, so that part of SCIA’s work is a top priority for me. How has SCIA influenced your life? SCIA has been very important to me during my 20 years knowing and loving David, as he always shared so much of his work with me. I used to really feel a part of me was connected to SCIA because I admired his strength in the many campaigns that David fought in advocacy – both the achievements and also the frustrations. My life has been changed immeasurably by much greater appreciation of the life issues which people with physical disabilities cope with on a daily basis. I have learnt the power of story as a way

of opening minds to new possibilities. Through David and the many people I have met through SCIA I am very mindful of how each individual story has the ability to touch, enlarge, strengthen resolve and make you want to get up and do something to raise awareness. Though I do not have David’s physical presence in my life now, his spirit and values are with me always and I wish to continue to honour, respect and to act on them. The spirit of those early founders is at the heart of SCIA and any anniversary is always a time of reflection. As we look ahead, it is also constructive to appreciate all that has gone before that has helped shape the organisation. My thanks to SCIA for allowing me to be a part of this celebratory year. ■ www.scia.org.au 27

REGIONAL ROUND UP

Our regional people Spinal Cord Injuries Australia’s (SCIA) regional team advocates for the rights and entitlements of people with disability living in regional areas. They are committed to creating independence, dignity and unlimited opportunities for people living with spinal cord injury. Our team looks forward to hearing from you. Lee Clark Northern Rivers Shop 27, Alstonville Plaza, Main Street, Alstonville NSW 2477 T: 02 6628 3409 M: 0421 055 992 E: northernrivers@scia.org.au Craig Lees Central West/Mudgee PO Box 1140 Mudgee NSW 2850 T: 02 6372 1892 M: 0413 367 523 E: centralwest@scia.org.au Glenda Hodges New England 20 Murray Street Tamworth NSW 2340 T: 02 6766 6422 M: 0427 257 471 E: newengland@scia.org.au Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower Wollongong Central, 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au

Boost to leisure activities in Lismore Lee Clark, Northern Rivers

With the heat of summer here, everyone wants to get down to our beautiful beaches for a swim or just to dangle their toes in the water. Perhaps enjoying nature and bushwalking is more your thing. But if you’re in a wheelchair, then the question is, how? Well, to date, beach wheelchairs have been available at most local beaches (you can find locations on council websites), but Lismore City Council has gone one step further and taken the initiative to purchase an all-terrain wheelchair for people to hire. The new Hippocampe beach and all terrain wheelchair, funded for $8,300 by The Lismore City Lions Club in partnership with the Lions Northern NSW Community Trust, is stored at Goonellabah Sports and Aquatic Centre (GSAC). It is a really cool chair as it has two sets of wheels, one set for the beach and another set for hard terrain, such as bushwalking trails. Lifestyle Solutions will cover the cost of ongoing maintenance and repairs, Disability and Aged Information Service will operate the booking and hire system, and GSAC will store the chair. Spinal Cord Injuries Australia has provided training for GSAC staff. The beach wheelchair is available for use seven days a week from GSAC at 50 Oliver Avenue, Goonellabah. Summer hours for pick-up and drop-off are Monday to Friday 6am to 7pm, Saturday 8am to 5pm and Sunday 10am to 5pm. The chair is available for hire for a 24-hour period and an individual is required at all times to support the wheelchair when being used outdoors. Bookings can be made through DAISI at admin@daisi.asn.au or on 1800 800 340.

NeuroMoves is coming to Lismore I am so excited that SCIA’s exercise service, NeuroMoves, is opening at Southern Cross University (SCU) Health Campus in Lismore. This will provide a fantastic facility for people with spinal cord injury and other physical and neurological disabilities to access state of the art exercise programs that are designed to suit individual needs. A NeuroMoves information briefing, held on 23 November, was very well attended by people with disability, their carers and many professionals who all showed interest in learning about how NeuroMoves can improve lives through movement. I have no doubt that the program will be successful because clinicians who are based at the SCU Health Campus have already starting working with their patients and incorporating NeuroMoves programs into their care plans. It will also provide a great opportunity for university students to learn and participate in hands on learning while studying. The venue provides accessible parking right outside the Health Campus and can be accessed via Kellas Street, Lismore Heights or Rifle Range Road, East Lismore.

28 accord magazine

REGIONAL ROUND UP A big thank you to Newcastle Permanent and the icare Foundation for providing the generous funding to open the centre and purchase the required equipment to open this fabulous gym, making Lismore the first regional NeuroMoves facility. A huge thank you also to Kierre Williams, Head of NeuroMoves at SCIA and Peter Murray, Head of Development at SCIA, for believing in the Northern Rivers region and supporting the opening of NeuroMoves in Lismore. For more information on how to join this program, please contact us 1800 819 775 or visit www.scia.org.au/neuromoves.

NeuroMoves client Ben engaged in his tailored exercise program.

Transport access remains an issue Glenda Hodges, New England

With Christmas nearly a distant memory, it’s time to look back and wonder where the year went! The past 12 months have seen many different events take place in the New England region to help people understand government changes that took place in July, beginning with the introduction of the National Disability Insurance Scheme (NDIS). A number of information sessions were held, with many service providers offering advice as well as hosting representatives from the NDIS to talk about what to expect with this new world transition. However, at this point, there’s still a lot of confusion and contradiction. We are still fighting to get safe access to railway transport in this area – sometimes there seems to be a small breakthrough before ending up on the too hard pile again. Another example of a lack of consistency and lots of contradictions. Steve Austin, New England social networker, has been working tirelessly to gain a positive outcome for this problem. Steve is having better luck undertaking research to purchase fishing equipment for people with dexterity and mobility issues, and is looking at a fishing trip for interested people in his region next year. Other events that happened last year include the expos in regional areas and Sydney. Tamworth, Armidale and Quirindi have all held interesting events with differing levels of attendance, but still very successful and with some great information about service provision for all people with disabilities.

Accessible bathroom a winner for Ballina Following on from an article I wrote for accord’s spring issue, regarding the Changing Places Accessible Toilet Facility in Ballina, I want to heartily congratulate Ballina Shire Council. The Council was Highly Commended in the recent Institute of Public Works Engineering Australasia (IPWEA) NSW Engineering Excellence Awards for the category Design and/ or Construction of a Local Government Public Works Project. Well done for providing such a great, accessible toilet facility for all people in their community, both locals and visitors.

We'd like to take the opportunity to thank all the people who were part of this service last year. The discussion groups in Tamworth have been very informative with interesting debate coming from some unexpected places. We’re looking forward to the rest of 2017 – and hopefully it will slow down a little so we can enjoy it!!

Changing Places facilities are helping break down one of the fundamental barriers to inclusion for thousands of Australians with higher support needs. However, there is currently only a small handful of Changing Places or adult change facilities in Australia, so it’s important we keep pushing for more. Ballina Council doesn’t see the installation of the Changing Places facility as an extravagance, but a necessity so that residents, visitors and their carers can visit the area and have suitable amenities readily available. These facilities can only be accessed by using a Master Locksmith Access Key (MLAK), so if you need to get one, which will provide access to all MLAK facilities, please contact Council on 02 6686 4444.

continued ▶ www.scia.org.au 29

REGIONAL ROUND UP

Beach chairs now also available in the Shoalhaven Mel Gorman, Illawarra and South Coast

Following feedback from the community, Shoalhaven City Council has purchased 10 new beach wheelchairs available at various beaches around the city. The all terrain wheelchairs will provide and improve access to beaches for children and adults. They will assist in making mainstream activities such as visiting the beach accessible for all. The beach wheelchairs will be available free of charge through Shoalhaven Heads Beach Surf Club, Culburra Beach Surf Club, Sussex Inlet Beach Surf Club, Mollymook Beach Surf Club, Huskisson Beach, Moona - Moona Creek/ Lake Tabourie Holiday Haven Parks and Palm Beach Greville’s Corner Store during beach patrol season. Each patrolled beach site will have both an adult and child size chair available for outdoor use only. The wheelchairs have been made available to the community through a collaboration between FundAbility, Shoalhaven City Council, Surf Lifesaving South Coast Branch, Holiday Haven Tourist Parks and Greville’s Corner Store. For more information, contact Community Development, Shoalhaven City Council on 02 4429 3418 or email council@shoalhaven.nsw.gov.au.

Illawarra disability alliance Spinal Cord Injuries Australia (SCIA) is proud to be part of the Illawarra Disability Alliance (IDA). The IDA is a group of not for profit (NFP) disability-specific providers working collaboratively to deliver better outcomes for people with disability living in our local community. We understand the important role that NFP organisations play in the community and seek to strengthen that support through this alliance. The IDA has launched a new website www.illawarradisabilityalliance.org/ which can be used as a portal to find local organisations that provide services you may require. With the rollout of the National Disability Insurance Scheme quickly approaching, it’s really helpful to have information on local NFP providers all in the one place. The IDA supports the community in many other ways, too. Most recently, it supported the Unanderra Access Group by advocating for the much needed accessibility upgrade at Unanderra train station.

Your chance to learn about the NDIS Following the success of the National Disability Insurance Scheme (NDIS) information sessions held in 2016, SCIA will once again be holding a series of sessions in regions that will start to transition into the NDIS across New South Wales from 1 July 2017. The sessions are a great source of information on how to prepare for your NDIS planning meeting, what you are eligible for, how to make the most of the NDIS in relation to your goals and aspirations as well as continuing your home care. The sessions are held by the SCIA team who have been working with members and clients who have already transitioned, so have up-to-date information and can answer general and more specific questions you have for yourself or a family member or loved one. We will send emails with more information, and feature the education sessions on our website so keep visiting scia.org.au/ndis or sign-up to receive our electronic communications including our enews and dates for events and activities at scia.org.au ■

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NDIS CASE STUDY

NDIS transition continues As the NDIS continues to roll out, we speak to a service provider and client to gain an insight into the transition process to date and what you can expect. Sergei with his modified vehicle.

Interior of the vehicle.

ergei is a PME client and transitioned to the NDIS in 2016. He is 25 and enjoys music, diving and entertainment technology. Sergei sustained incomplete C6 quadriplegia as a teenager. Sergei's car has been modified by PME.

What did you do to prepare for your first NDIS planning meeting? I gathered all my disability related expenses and contacted SCIA. SCIA provided documents which help organise this data and explained all the categories the NDIS uses to allocate funding.

Our partners Coloplast, Permobil, Revitalife, Independent Living Specialists, Blue Badge Insurance Australia and Problem Management Engineering (PME) are also registered as NDIS service providers.

How did you find the process of getting on the road? Getting on the road is essential in the quest for independence. There are hurdles, but once you’re there you can taste the freedom and have a bit of fun.

he National Disability Insurance Scheme (NDIS) continues to roll-out in 2017. Spinal Cord Injuries Australia (SCIA) is registered as an NDIS service provider in NSW and the process is underway in other states.

PME have specialised in bespoke vehicle modifications for more than 20 years and Managing Director Bill Georgas uses a wheelchair himself. He spoke to SCIA about being an NDIS service provider. How have you found the transition into the NDIS? We have been a provider since the trial sites began. Transitioning into the myplace portal was relatively straight forward. However, we had a few difficulties with the authentication processes. Thankfully this is now sorted. Have you found the process to provide services easy? If the client’s plans are 100% set with sufficient funds allocated to vehicle modifications the process is easy. The difficulty is when not enough funds are allocated to the correct support items. This is difficult for the client and us.

Make sure you understand what the NDIS is telling you and ask any questions as soon as possible. What do you think of your PME modifications? The modifications are the closest thing to being perfect. It’s my second vehicle modified by PME, this time fitted with electronically-assisted hand controls. For my performance vehicle throttle response is key. Power delivery is smooth and doesn’t suffer any drawbacks as opposed to using the pedal. The workmanship is neat, looks manufacturer-spec and anyone can jump in and use the car too.

How did you find the first NDIS planning meeting? Everyone’s NDIS experience is unique. Mine was a phone interview, which proved to be disastrous and resulted in a mislabelling of my disability and far less support than I expected. After sending a long letter to the NDIS they reviewed my plan fairly. What is your advice to others transitioning to the NDIS? The NDIS is new and being refined. Make sure you understand what the NDIS is telling you and ask any questions as soon as possible. Make sure your plan has room for quotes on assistive technology like car modifications. ■

Want more info? SCIA will hold information sessions in NSW regions transitioning from 1 July 2017. Learn more about the NDIS at scia.org.au/ndis or phone us on 1800 819 775.

www.scia.org.au 31

TECHNOLOGY Graeme Smith, Ability Technology

Hey Siri on iPhone 6 I have an iPhone 6+ and I want to be able to use Hey Siri even when it is not plugged into power. This would enable me to make emergency calls if there is a power blackout, or to make calls when I am out and about. But Hey Siri only seems to work when the phone is plugged into power. What can I do? This issue has caused a lot of confusion. The iPhone 6S, 6S+ and later versions enable you to use Hey Siri any time – you don’t need to be connected to power. The S is important. The plain iPhone 6 and 6+ do not have this feature. You will need to upgrade to a 6S+ or 7 to use Hey Siri away from power. By the way, you can trick your phone into using Hey Siri if your phone is plugged into your recharge pack, but the length of time you can access the service will depend on the pack itself.

Head pointer on a tablet I have been using a SmartNav device on my desktop computer for years. I wear a small reflective dot on my glasses and this enables me to control the cursor on the computer screen, just by moving my head. I would like to have something more portable, like an iPad, but I don’t think the SmartNav will work on tablets. Is that true? What are my options?

The simplest solution for you, if you wished to continue using the SmartNav, may be to get a Windows tablet. But remember that the experience will be different on the small tablet screen compared with the bigger screen on the desktop computer you’re using now.

Currently, there are no head or mouth pointing options available for the iPad. However, we have tested a few devices based on head or mouth movement (such as the Tracker Pro, Lipstick, QuadJoy and IntegraMouse) and all work on Android tablets, so you might find one of these meets your needs. However, the SmartNav won’t work on Android because it requires software, and this is only available for Windows and Mac.

NDIS and assistive technology I am about to develop a plan as part of the National Disability Insurance Scheme (NDIS) and I would like to include in it some computer-related and home automation technology. I don’t know what equipment to include without having an assessment. If I include an assessment, I’ll have to wait 12 months until the plan review to implement the assessment recommendations. How do I get around this? We have been active in the trial sites in the Hunter, Canberra and Western Sydney and this problem keeps coming up, especially for people just starting with the NDIS. It’s obvious in most cases that assistive technology will be needed, but the required equipment and services can’t be specified in the plan without an assessment, which is also part of the plan. There are two ways around this. The first is to pay for an assessment prior to the plan, and then use the report’s recommendations to include in the plan. This is what a lot of people do. A second option is to obtain a quotation or estimate, for both the assessment and the likely recommendations for equipment 32 accord magazine

and services. For an experienced service (such as Ability Technology) we can do our best to ensure that the quotation covers likely equipment and service needs for the life of the plan (usually 12 months). Obviously this is less precise than having the results of the assessment available, but it is better than waiting for 12 months (or trying to have the plan reviewed beforehand). The importance of assistive technology is well recognised in the NDIS. They have a great Assistive Technology Strategy – well worth a read https://ndis.gov.au/about-us/ information-publications-and-reports/ assistive-technology-strategy).

Ability Technology is in Northern and Western Sydney, Newcastle, Canberra, Brisbane, Melbourne and Adelaide. If you have any technology related questions contact the Ability Technology team at info@ability.org.au

Technology From the workshop:

means

Independence

Productivity

Connection

Where do you start?

• W e recently set up a music system for a client. He wanted to keep his speakers from his existing set up, but have overall control from his computer or iPod. We set up a SONOS system and it works really well. After a few adjustments, set up was relatively straightforward. • W e are often asked about backup methods for clients. Backing up to a home hard drive is great and will protect you in the event of computer malfunction. But it may not help you in the event of theft or fire if the backup itself is stolen or is destroyed in the blaze. This is why we recommend cloud-based backup such as DropBox, which will cover you for any emergency. • F or those using an iPad for speech, the sound volume is hardly adequate. The iPad Pro, however, has four speakers and offers much better volume.

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www.scia.org.au 33

ADVERTORIAL

For Sharon, The NDIS is an opportunity for better health:

What could it mean for you?

Sharon is a disabled water-skier from Sydney, living an often adrenaline packed and highly active life. For her, the biggest challenge around urinary incontinence is urinary tract infections (UTIs) and how they can affect her health and disrupt her lifestyle. When it comes to the National Disability Insurance Scheme (NDIS), Sharon is hoping to get funding for Coloplast single use catheters after having tried some and had success. The NDIS funding may mean Sharon can get support for single-use catheters which can be linked to a reduction in UTIs. Sharon’s story Twenty-five years ago at the age of 19, Sharon was involved in a horse riding accident. While riding, the horse did the bolt for home and ran her into a tree. Sharon survived the accident but was left a C5-C6 incomplete quadriplegic. Her positive outlook on life has never faulted though and she continues to live with an infectious zest for life, letting nothing stand in the way of her experiencing all there is to offer. In her own words, she is someone who “will give anything a go even if I may do it a little differently.” This enthusiasm to try new things began a good few years back when Sharon actually went on a sky dive – a thrilling experience that had her on a high for weeks. It was during this particularly adventurous period when a local sports and recreation representative suggested that Sharon try disabled water-skiing. Fast forward to 2017 and Sharon has now been competing for eight years in the slalom, runs the disabled water-skiing division of NSW and holds a joint Australian record. But it’s not always been plain sailing, since the accident Sharon has had to use intermittent catheters to make sure her bladder is properly emptied and she has suffered from multiple urinary tract infections. Recently Sharon was hospitalised as a result of a particularly serious UTI and even had to switch antibiotics as her body had become immune to them from frequent usage with previous UTIs. As a front line defence against future infections, moving from re-usable catheters to single-use products is 34 accord magazine

something Sharon is hoping the NDIS can help her with. Aside from the waterskiing, Sharon also works four days a week in the finance sector, is regularly at the gym and watches her nephew play soccer at the weekend so it’s easy to see why maintaining her health is essential. The current funding she receives isn’t enough but with the NDIS Sharon is hoping she won’t need to worry about reusing catheters or about contracting UTIs anymore, something that will make a big difference to her day to day life.

How you can prepare for the NDIS The NDIS rolls out mid-2017 in Sharon’s area of NSW, but the amount of information out there for participants like her regarding continence care is slim. Sharon has done her homework and spoken to Coloplast, receiving samples to see what works for her and an NDIS information pack from the team. The product samples Sharon received have helped Sharon decide on the right product for her needs which she’ll be ensuring are on her NDIS plan. Not everyone is as prepared as Sharon though. In a recent NDIS participant survey conducted by Coloplast, it was found that unless continence is actively raised by the participant or the planner it may be completely missed all together. In fact, 25% of survey participants did not have continence raised at all during their planning meeting. Participants said: “I didn’t even know I could have included continence products on the plan” and “I would have appreciated more information about the different

The 5 steps to NDIS success: 1. Confirm your eligibility for the NDIS 2. Prepare for your NDIS planning meeting 3. Discuss your support needs with NDIS representative 4. Receive and approve your plan 5. Implement your plan products available before my planning meeting”. Furthermore, the survey found that 40% of participants would like to make changes to their continence funding in their next NDIS meeting. The team at Coloplast can guide you in understanding how to navigate the NDIS by helping you to prepare for the relevant conversations in relation to your continence needs. Coloplast facilitates this by providing you with a helpful pack for you to document the continence supports you may need over a year, help you explore other solutions, and understand how much money you would need in your plan to accommodate this. With the right funding and the right products via the NDIS you’re able to live your life without bladder and bowel issues interfering. Call the Coloplast continence hotline on freecall 1800 316 650 to discuss your needs in a safe and confidential environment. ■

For me the NDIS is about living a healthier life Sharon, a C5/6 incomplete quadriplegic and NDIS hopeful

Sharon is an Australian disabled water-skiing record holder but regularly suffers from UTIs. Sharon hopes the NDIS will grant her the funding she needs for better continence care products. Did you know you could get better funding for continence care via the NDIS? Call us or register online today and weâ&#x20AC;&#x2122;ll help you through the process.

1800 316 650

coloplast.com.au/ndis

www.scia.org.au 35

INFORMATION AND RESOURCES We Can Go Anywhere: My Adventures on Daddy’s Chair by Glen Dick (author), Linda McManus (illustrator) In this beautiful story of a child’s innocence we are taught that what the rest of the world sees as a limitation becomes a great source of adventure and freedom. Borrow from the SCIA library or visit: http://bit.ly/wecango

Where Fairy Tales Go: A Love Story by Annette Ross An inspirational memoir told by mother of five, Annette Ross recounts the harrowing and lifealtering medical error that left her unable to walk. Resilient in the face of personal challenges and financial struggles, Annette and her family embark on a journey to reclaim a lost fairy tale. Borrow from the SCIA library or visit: http://bit.ly/fairytalesgo

Disability and the Media by Katie Ellis and Gerard Goggin An approachable but critical introduction to the complex relationship between disability and the media, with analysis and examples of a range of contemporary media issues. Borrow from the SCIA library or visit: http://bit.ly/mediaconcerns

I Love Today: A Story of Transformation by Mark Johnson and Kristen E. Vincent After a diving accident left him paralysed, Mark struggled with the social attitudes that labelled people with disabilities as inferior. In 1983 he had the opportunity to co-found Adapt, a network of people with disabilities that played a role in passing the Americans with Disabilities Act. Confronting and changing social attitudes certainly requires boldness and tactics. However, Mark is better known for encouraging them to consider the benefits of accepting our differences. Borrow from the SCIA library or visit: http://bit.ly/ilovetodaystory

Lightning Strikes Twice by Miguel Ruiz Limardo This is the author’s true story of triumph and rehabilitation from his initial diving accident and a second neck surgery at the age of 52. With no one to care for him, yet too young to be in a nursing home, he fights the system and becomes an advocate for those who cannot speak for themselves. Borrow it from the SCIA Library or visit: http://bit.ly/lightningtwice

Don’t call it a miracle: the movement to cure spinal cord injury by Kate Willette A comprehensive introduction to the world of spinal cord injury research. It provides the basic information advocates need to push effectively for faster cures. Purchase the ebook from: http://bit.ly/dontcallitamiracle

Zero Assistance Resistance Training by Dan Highcock Dan Highcock was injured in a motorbike accident at the age of five. Undeterred, his “can do” mindset has led him to become a Paralympic wheelchair basketball player and online personal trainer and nutrition coach. This 12-week fitness program works your whole upper body and cardiovascular system using dumbbells, plates, adjustable cable racks and resistance bands – in your chair, independently. Borrow it from the SCIA Library or visit: http://bit.ly/ZeroAssistance 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. 36 accord magazine

REVIEW

Life goes on – a journey from ICU to Vienna By Shirley Carpenter, Information Services Manager, Spinal Cord Injuries Australia

Written by Rachel James Published by StrongTPublishing

hat do you do after you receive news that will change your life forever? When Rachel James received a call to say her daughter Emily was involved in a serious accident and would be a quadriplegic, Rachel realised that her life, and the lives of all those close to her, would never be the same again. For when someone sustains a spinal cord injury, it profoundly affects not just the individual but everyone else around them. In her book, Suddenly an Everyday Carer, Rachel James writes eloquently and honestly about her own experiences, offering a deeply personal account into what it’s like to support a person who has undergone such a life-changing event. We learn that in the beginning everyone is in the dark – that you aren’t going to know what questions to ask or what the impact will be of what you’re told. You will probably be in denial; be convinced that the injured person will recover. There will be a lot of not knowing, speculating, theorising, thinking things are surely not as bad as the doctors say. There will be a whole gamut of emotions and feelings. Disbelief, helplessness, guilt, anger, sorrow, sadness, gratitude, and mourning what you perceive to be lost are just some of the phases you will go through. Rachel recommends that it’s important to embrace all feelings and emotions, no matter how hard or traumatic. She also believes it’s important not to pressure yourself, because at the end of the day, “each individual recovers in their own way, in their own time, on their own path to their own life.” Rachel suggests that selective denial might need to be practised when dealing with the news and that it is perfectly fine to leave some of the harder things to deal with until later, when you’re stronger.

tips, information and advice on how to cope during this traumatic time. She also talks about the stages a carer will go through, the feelings they experience, the importance of friends, support networks and carer groups. Plus how important it is to look after yourself and to have a sense of humour. Rachel and Emily never imagined where life would take them and, sitting in the intensive care unit in those early days, they probably didn’t imagine that one day they would be travelling around Europe, rolling over Viennese cobblestones, eating delicious food and enjoying a life that was now a little different to before, but just as good. I’ll end my review with some really perceptive thoughts from Rachel. “Coping is about catching everything thrown at you and still remembering to breathe. It’s about listening to what is being said and controlling the extremes of your emotions while also trying to understand the impact of catastrophe on the person, on the family, on all our lives. It’s about understanding the changes – immediate and long term – and knowing that you have to live through it because, ultimately, life goes on.” Suddenly An Everyday Carer provides readers with a wealth of practical advice and things to contemplate and will make a great addition to any carer’s toolbox. It can be purchased from Amazon as a Kindle book. All proceeds go towards SpinalCure Australia, whose aim is to find treatments for spinal cord injury through the promotion and funding of medical research. ■

Rachel’s nursing experience became an advantage, especially in the early days of Emily’s injury, but she firmly believes that anyone can become an effective carer. Rachel’s book provides loads of practical www.scia.org.au 37

LEGAL RIGHTS

Know your rights in the workplace Penelope Parker, Graduate, Industrial and Employment Law, Slater and Gordon Lawyers

n a recent Senate Committee hearing, Australian Human Rights Commission (AHRC) President, Professor Gillian Triggs, revealed that disability discrimination, in the context of employment, is one of the largest categories of complaints received by the AHRC. In light of this fact, it’s important that all Australians living with a disability who are employed or looking for work, have an understanding of how their rights are protected by law. On a national level, the Disability Discrimination Act 1992 (Cth) (DDA) and the Fair Work Act 2009 (Cth) (Fair Work Act) are the two main sources of legislative protection against disability discrimination in employment. The DDA prohibits both direct and indirect discrimination. Direct discrimination is where an employee is treated less favourably than other employees, because of their disability. In contrast, indirect discrimination includes more subtle behaviour. It refers to where an employer requires an employee to comply with a requirement which they cannot do, and are treated less favourably as a result. The employer has an obligation to make reasonable adjustments to assist an affected person to comply with the requirement. Complaints under this statutory regime are typically dealt with by the AHRC in the first instance. C

In contrast, the discrimination provisions in the Fair Work Act, also known as the “General Protection” provisions, aim to prohibit “adverse action” being taken by an employer against the employee “by reason of ” the employee’s disability. Adverse action encompasses a variety of behaviours, including dismissing an employee, choosing not to hire a potential employee and discriminating against an existing employee in the terms of their employment. What the General Protections don’t do, however, is to require an employer to make reasonable adjustments to accommodate M

CMY

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their employees’ needs. If a General Protections matter doesn’t involve the termination of employment, a complaint may be dealt with by the Fair Work Commission; although such conciliation isn’t compulsory. An important feature of the General Protection provisions is the reverse onus of proof. This means that the person alleging discrimination only needs to prove that the employer took the adverse action against them. The onus is then on the employer to establish that they didn’t take the adverse action “because of ” the person’s disability. In practice, however, the reverse onus has been interpreted and applied very narrowly by the courts. If you feel you’ve suffered discrimination in the workplace because of your disability, we would always recommend you obtain legal advice in relation to your particular circumstances before submitting a complaint to either the AHRC or the Fair Work Commission. ■ Penelope Parker is a lawyer at Slater and Gordon Lawyers. For more information visit www.slatergordon.com.au 2017 0116 SCIA PQBSA Svcs 90x130 JAN OL.pdf 1

16/01/2017 10:51:23 AM

As part of our 50th anniversary celebrations we would like to invite our members to save the date to attend the SCIA 50th anniversary

The evening will feature entertainment, guest speakers, raffles and the opportunity to reflect on the great work that has been achieved by SCIA members over the past 50 years. Tickets will be available in the next couple of months, so watch this space for more information.

Spinal Cord Injuries Australia (SCIA) is seeking video clips from members to use as part of our 50th anniversary activities. We are asking members, clients and their family and friends to film a short 30 second video sharing why SCIA is important to you. We will be using a selection of the videos in a film we are making to celebrate our anniversary.

For more information on what we need and how to capture your thoughts on video, please visit scia.org.au/video50

1800 819 775 | scia.org.au Celebrating 50 Years: 1967â&#x2C6;&#x2019;2017

www.scia.org.au 39

SOCIAL MEDIA

Do you need someone to talk to? SCIA is piloting a counselling service for people with spinal cord injury and their family members, carers and immediate network. We’re offering 12 free counselling sessions in our Sydney city office every Tuesday, or our Little Bay office every Friday.

#BREAKINGNEWS: our partnership with the icare NSW Foundation will bring lifechanging exercise to people in regional Australia. icare will fund NeuroMoves in Lismore, with the potential to expand to other regional areas: http://bit.ly/icareSCIA

And we’re live! Tune in to our continence webcast now. www.webcasts.com.au/scia

Thanks to everyone who put a token in our jar at Grill’d (Victoria St, Darlinghurst). We received a generous donation of $300 as part of “Local Matters”!

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The Autoslide promotes inclusion by giving people a greater level of self-sufficiency. It enhances an active lifestyle by making exit/ entry effortless. No more fumbling with doors or waiting for assistance, the Autoslide is your personal doorman.

Attaches to most existing sliding doors

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