Accord - Autumn 2015

Autumn 2015

NDIS - WHAT DOES THE FUTURE HOLD?

+ PARALYMPIC PIONEER | SCIA JOINS FORCES WITH THE NRL | SAVING BURN RUBBER BURN

From products to free clinical advice...

We’ve got you covered!

At Independence Australia, we carry all the major continence brands and stock thousands of specialty products. • Over 2,900 continence and urology products available • Free samples for disposable continence products • Urology and Continence Nurse Advisor available to assist with product choice and management strategies, free of charge • Sample day delivery available • No minimum order • Discreet packaging • Free delivery for all online orders.

with us, you help to support and provide vital services to people living in the community with a disability or physical need.

Order today 1300 788 855 1300 788 811 customerservice@independenceaustralia.com www.independenceaustralia.com

No waiting...

$400

credit*

Nominate Independence Australia as your CAPS supplier today! *Conditions apply.

$F

10

<

02

F 05 % & $'

) . 3# 7-C ) . 3# "

3 G / 3 4

G #

3 G I R@

$& 20

F 25 ' %

!

O

) 3

G

10 # 3 3# @ 3 # P

E @ .

<

$F "

I .I

E "

6

.

. 4

E

3 - 3

" 8 < < QI 7 3 7

" 3

-+ 6 3# / " 3 7 89 :7 ;< 3 => 6 ?6 @ 3# 7 ..

4 3# C@ 8 3 Accord I / @ I 7 E K 8 3 87 $ ! ' F E I 3

1 Jennifer Street, ! "# $% %$& ''( ) + &!!$ &(&% -.

/ 3 444

Editor Helen Borger Designer Shauna Milani

" 3 D8 "3 3 E $FF%?F$F( G# I

+I

8 3

3# @ I 7 E K 8 3 ; 7E8= @ 3# - 3 G# I / # 3 3 @ . @ / 3

3 3 I I 4 3# / C . 3 8 / I 4 3# I .

@ . 3# - 3 E @ .

8 @

#

3 3# + 3

/ 3 @

8 #

3# 3# 3 L 3# @ @ 3

@ 3#

3 .

3# @

.

I

/ 3 @ 3# L

> @ 3 N 3 @

# 3 .

8 @ / 3# 4 3#

O I 3.

3 @ ) .

7 ..

3 > 8 > O / 3 . 7

FROM THE CEO

PETER PERRY

UEG8 -V-<7E - "<C6<8:

@ .

For almost half a century, SCIA has been there when our members have been most in need. We may not be perfect in everything we do, but when we can do something significant, which has a positive impact on a large number of people all at once, it makes me feel very proud to be part of such an organisation â&#x20AC;&#x201C; one which is truly focused on its membersâ&#x20AC;&#x2122; needs.

Late last year, we became aware that the Burn Rubber Burn program was about to close down. Burn Rubber Burn is a health and fitness program developed for individuals with a physical disability. It was started in 2006 by Simone Robinson, who has remained the driving force behind it to this day. The program currently operates out of five centres in metropolitan Sydney: Bankstown, Daceyville, Minto, Penrith and Sutherland.

SCIA has been a big fan of Burn Rubber Burn since it began, as weâ&#x20AC;&#x2122;ve heard from many of our members and staff about how life changing this innovative program has been for them. After becoming aware that the program was almost certainly going to close, we started discussions with the Police Citizens Youth Clubs (PCYC) (who had been hosting the program for a number of years) to see if the program could be continued under SCIAâ&#x20AC;&#x2122;s control. The PCYC management was very concerned about finding a way to keep the program running. Although they couldnâ&#x20AC;&#x2122;t keep it running themselves, for a range of reasons, they were very supportive of SCIAâ&#x20AC;&#x2122;s desire to make sure that such a valuable service was not lost to the community.

After a lot of discussions, both internally and externally, the SCIA Board agreed just before Christmas to take over the running of the program. The great thing for 2

accord magazine

existing clients is that the program is able to continue exactly as it has before, with no changes to locations, gym times, staff, equipment or fees. After experiencing the fear and sadness generated by the potential loss of the program, the Burn Rubber Burn clients are now very excited to be able to continue improving and maintaining their health and fitness in the only facilities of this type. SCIA is very happy to have been in a position to keep this highly valued program in operation.

G# < //

3

4 + 3 3 / / 3

.I

.

3

3# # 3# W3

Meanwhile, our other exercise programs are continuing to change lives across Australia. Walk On, our flagship program, has a growing number of clients who report positive results from their involvement. When Walk On started in 2008, the clients had to pay their own fees, but now around a quarter of the clients are funded by bodies such as government agencies and insurance companies who see the benefits that people are experiencing.

Nevertheless, we also recognise the need for a variety of other exercise options, so we are developing conditioning programs, home programs and programs delivered online and remotely, as well as training for physiotherapists and exercise physiologists This all points to the fact that exercise is the best medicine, especially after a spinal cord injury. T

JOAN HUME FROM THE PRESIDENT

8 <E7 8 O UE <8 G # 3 In my first column I would like to say how honoured I am to have been elected President of an organisation which has such a proud history of serving people with spinal cord injuries and other severe disabilities. Nearly 50 years have passed since a group of young men, exiled to a back ward of Prince of Wales Hospital in Randwick, dreamed of a better life for people with quadriplegia and were determined to achieve it. Among those young pathfinders were David Fox, John Munday, Cecil Murr, Brian Shirt, Bob Mackenzie, George Mamo, Trevor Annetts and Tom Clark. Many were to follow.

They formed the Australian Quadriplegic Association (AQA) to build a purposedesigned hostel for people with severe disabilities to lead more dignified and independent lives in the community where they belonged. At first there was an “office” in the front room of a nursing home. Then there were chook raffles and cake stalls and street collections and fundraising dinners.

Then a grant of crown land near Prince Henry Hospital at Little Bay, an office built, and Ashton Nursing Home leased for transitional accommodation. AQA was now well and truly on its way. Ironically the original plan for the 30 bed hostel was never realised because the vision of what independent living meant shifted with changing times.

The organisation was to play a leading role in the burgeoning disability rights movement in Australia and nurtured many of its future leaders and thinkers.

These included the late Bronwyn Moye, David Brice, Ian Dalwood, Ellie Mayhew, Kevin Byrne, Kim Ewing and Brian Newton. John Moxon, Mark Bagshaw, Rosemary Kayess, Kim Rowles, Jo Marnie, Tony Jones and Greg Killeen

are fortunately still with us and most active in various roles in the community: advocacy, academia, education, government, information technology and access.

XI / #

Y 3

: / 4

. @

> > #3

. 3 X My involvement with SCIA commenced when I became the first voluntary editor of Quad Wrangle (now Accord) in 1977. The cheeky title was alas not of my devising. That honour belonged to the late Wendy Stuart, a polio survivor since the age of 12, mostly confined to bed in an iron lung, long before portable ventilators became widely used. Wendy and I were co-conspirators in the planning, researching and writing of each issue. Her tiny bedroom in a ground floor public housing flat in Maroubra was a dynamo of discussions, ideas, laughter and some tears, especially as her untimely death drew near.

She was only 40 when she died.

A fundraiser, publicity officer, board member, secretary extraordinaire, Wendy was also gentle and humble. Her quiet demeanour masking a fierce intelligence and sharp wit. The spirit of her resilience and grace in adversity is woven intricately into the fabric of SCIA’s story, along with the grit and foresight of its founders. Stuart House, an SCIA supported accommodation residence, is named in her honour.

Wendy’s story is but one of many from our diverse membership. We welcome all of you, your stories and feedback. I look forward to hearing from you. T www.scia.org.au

TRIBUTE

E O 4 $&( Z $(

By John Moxon

Some people with a disability go about their lives quietly, more or less doing the best they can to work around the many obstacles put in our way by a society which, by and large, is ignorant or uncaring of the negative effects of its inaccessible designs and procedures.

Ian Dalwood was not one of those people. Ian was a fierce advocate for himself and others.

When confronted with an unnecessary barrier â&#x20AC;&#x201C; like steps where there could also be a ramp, or a heavy door which could have an auto opener fitted â&#x20AC;&#x201C; Ian would complain to the owner and keep on complaining to higher and higher authorities usually until it was fixed.

The problem would then be rectified for anyone who needed wheelchair access.

E O 4

. I I 4 3#

/ 3 / 3 3# N 3 XE

O 4 4

3

@ 3# I I

Ian was born in 1952 to Christian missionaries, Fred and Dot, who were working in what was then known as the Belgian Congo (now part of the Democratic Republic of Congo) and just 13 months later, Ian contracted poliomyelitis. There was no polio vaccine in 1952.

His parents returned to Australia and Ian grew up in Ashfield, was educated at Broderick School and later at Sydney University where he graduated with a Bachelor of Social Work.

Securing a job with NSW Health, Ian and his wife, Jan Crawford, moved to Pambula on the New South Wales south coast in 1984. Ian and Jan built a home

F

accord magazine

in Kalaru, just out of Bega, and became an integral part of the local community.

After working for NSW Health for several years, Ian established the regional office of the Commonwealth Rehabilitation Service. He then set up the local office of Centrecare. Ian also worked for the Department of Social Services (Centrelink) in Bega.

For many years, Ian was a member of the Australian Quadriplegic Associationâ&#x20AC;&#x2122;s (AQA) board, before the name was changed to Spinal Cord Injuries Australia (SCIA). He would drive, and sometimes fly, up for each board meeting.

He also served on Bega Valley Councilâ&#x20AC;&#x2122;s Access Committee and achieved a number of significant victories â&#x20AC;&#x201C; including better access to the boardwalk at Merimbula.

In 2013, Ian was diagnosed with cancer of the oesophagus and was receiving chemotherapy. Recently, he and Jan took a short break to Milton where Ian contracted pneumonia. Despite being rushed to Canberra Hospital, Ian did not recover and died on 16 February 2015.

Ian was an intelligent, loving, sensitive and caring human being, who was always looking for ways to improve the world, especially, but not only, for people with a disability.

Ian will be very sorely missed by his wife Jan, his family and his many friends.

The world is a much poorer place for his passing.

NEWS

BREAKING NEWS: SCIA joins forces with the NRL Spinal Cord Injuries Australia (SCIA) has formed a partnership with the National Rugby League (NRL) to assist injured rugby league players and their families following a major injury.

As well as providing practical assistance, the partnership will also fund joint research initiatives to assist injured footballers.

The partnership will operate alongside the NRL’s soon-to-be-established Injured Players Foundation, which will provide long-term assistance to players who sustain severe and permanent disabilities while playing rugby league. The Foundation will cover players from schoolboys and juniors right through to first grade.

The way the partnership will operate is currently being finalised. Watch this space for more news on this exciting initiative.

Tribute to Phyllis Harding: 1944 – 2015

Job rules loosened up

Throughout her life, Phyllis Harding always found a way to overcome life’s challenges, and broke down many barriers placed in the way of people with spinal cord injury.

Face-to-face meetings between people with disability who have found work and disability employment service (DES) providers will not be required during an 18-month trial that started 1 April.

Following a motor vehicle accident in 1980, Phyllis was admitted to the Royal North Shore Hospital spinal injury unit with quadriplegia.

After many years of living and working in Sydney, Phyllis relocated to Bunderburg.

There she lobbied the council for better access, which led to the start of the local Access Committee. Later she moved to Grafton, where she soon became very busy

Out on the range Spinal Cord Injuries Australia (SCIA) members and clients took to the rifle range at the Sydney International Shooting Centre at Cecil Hills in late March.

Everyone enjoyed the day out and, literally, had a blast. The event is one of many that have been arranged by the SCIA Peer Support Team.

SCIA members and clients have been trying archery, ten pin bowling, as well as the rifle shooting. Many more events are coming up over the next few months, so don’t miss out!

For more details, visit the SCIA Facebook page or www.scia.org.au/events

on numerous committees, including Home Modifications (where she was the chairperson), Clarence Valley InterAgency and Allowance Inc (now known as Living My Way). She was also a director of the South Grafton RSL. She was held in very high regard for her commitment and tireless effort in all of these groups.

Her friends and family say Phyllis was a wonderful person, who was a great friend to many and fought courageously over many years through life’s adversities. She died on 6 January and will be dearly missed by her family, but remembered as one of Grafton’s icons.

These new federal government arrangements will apply once a person has found work and is in the ongoing support phase.

“Providers will be able to work with participants to determine the most effective method of engagement, which may include video conferencing, email, or telephone to better fit the needs of participants and their employers,” Assistant Minister for Social Services Senator Mitch Fifield said in a media statement.

“There will also be a relaxation of participant plan update requirements, and providers will now be able to contract third-party providers as part of their ongoing support services.”

The changes are in response to disability stakeholders, such as Disability Employment Australia (DEA), wanting to reduce administration requirements in the sector.

The changes will help ensure “people with disability, DES providers, and employers will have the most effective and efficient service possible”, said a DEA media statement. www.scia.org.au 5

Innovative Products Multichair 3000TX

• Lightweight • Portable • Functional

Multichair 4000TX

Multichair 4020

• Customisable • Designed for travelling Australian distributor

Ph | 1300 845 483 www.seatingdynamics.com.au

The SmartDrive® is a revolutionary power assist device that gives greater freedom and power to chair users.

• POWERFUL - Cruises up hills and over thick carpet • INTUITIVE - Push to go.

Brake to stop. It’s that simple • SIMPLE - Plug in and go for days between charges • FLEXIBLE - Moves with you for wheelies and curbs • LIGHTWEIGHT - So light, you won’t even know it’s there

Australian distributor

Ph | 1300 845 483 www.seatingdynamics.com.au

NEWS

laws start Incidents of abuse or violence that occur in disability supported group accommodation in New South Wales must be reported to the NSW Ombudsman in 30 days, under new laws that came into force in December.

Reportable incidents can include employee-to-client incidents, clientto-client incidents, contravention of an apprehended violence order or an unexplained serious injury.

The Secretary of the NSW Department of Family and Community Services (FACS) or head of a funded provider must report any such incident of which they become aware. â&#x20AC;&#x153;Our role under the new scheme is to oversee investigations undertaken by FACS or FACS funded providers into reportable incidents and to determine whether appropriate action has been taken as a result of the investigation,â&#x20AC;? the NSW Ombudsmanâ&#x20AC;&#x2122;s website says.

SCIA Independence Expo 2016 is on again Following the success of 2014, the SCIA Independence Expo 2016 will be held over two days, on 15 and 16 April 2016, at Australian Technology Park in Sydney.

This premier event provides an extensive range of lifestyle and disability products and services that will empower people with spinal cord injuries or similar disabilities to help them lead independent lives.

The SCIA Independence Expo 2016 wants to touch all aspects of peopleâ&#x20AC;&#x2122;s lives, including daily living, social life, relationships and aspirations. This means we are looking for a wide range of exhibitors to showcase products and services and to present relevant workshops and seminars.

For-profit and not-for-profit organisations are welcome to exhibit.

A survey of 2014 exhibitors found that 100 per cent of them would like to come back in 2016. â&#x20AC;&#x153;Great venue, lots of room for attendees, easy to drop off heavy items before set up, great to have access to discounted parking... attendees very interested and happy to spend time [discussing] their specific needs,â&#x20AC;? according to one 2014 exhibitor.

Most exhibitors found the 2014 Expo very cost effective, and exhibitors were kept busy with a large volume of interested clients.

Donâ&#x20AC;&#x2122;t miss the opportunity to connect with people with disabilities and their families and carers from all over Australia.

Visit www.scia.org.au/expo2016 to register your interest.

For further enquiries email expo@scia.org.au or call 1800 819 775.

Catastrophic injury scheme advances The federal government has released lifetime support options for people who suffer a catastrophic injury in a workplace incident.

The options are part of a consultation Regulatory Impact Statement (RIS) seeking feedback on the cost benefit of introducing a National Injury Insurance Scheme (NIIS).

The RIS includes the case for retaining existing workers compensation arrangements in the Commonwealth, states and territories, introducing minimum benchmarks or harmonising workers compensation schemes.

The RIS says retaining the existing workers compensation arrangements would mean that on some occasions lifetime care and support would fall short of minimum benchmarks and workers would have to have their support topped up by the National Disability Insurance Scheme (NDIS). However, under minimum benchmarks workers would receive lifetime support regardless of their age and would only need to use the NIIS. Harmonisation is not viewed as viable as it would likely result in fewer workers being eligible for support and services reduced.

Farewell to much-respected therapists The Spinal Cord Injuries Australia (SCIA) Walk On program has said goodbye to three highly respected therapists, but continues to power on.

Claudia James, Walk Onâ&#x20AC;&#x2122;s former Sydney team leader, has now started a new and exciting chapter of her life in the UK. Claudia is a dedicated, enthusiastic, boundarypushing exercise physiologist. Many clients have thanked her for helping them make significant gains.

Shane Gilligan, one of the first Walk On trainers in Australia, is now training as a recruit with the Queensland Fire and Emergency Service. Shane was the driving force behind Walk On Brisbane.

Shane Hill was the Walk On Melbourne team leader for three years. He left Melbourne in January to return to Adelaide and undertake further studies in health and teaching. He had been with the Melbourne team since the doors opened in January 2012, and he was an integral part of the success of the service.

Despite their departures, Walk On continues to power on. The Sydney office has welcomed back Alana Galpern from maternity leave to her role as team leader.

In the Melbourne Walk On office, Jessica Hansson has taken on the team leader role.

The right person is still being sought for the Brisbane Walk On office. www.scia.org.au '

TECHNOLOGY Graeme Smith, Ability Technology

"

" # $

" % &

'

(

(

For the Mac, use USB Overdrive (www.usboverdrive.com). It is a device driver for MacOSX that handles any USB or Bluetooth mouse, keyboard, trackball, joystick, gamepad or gaming device from any manufacturer. You can configure it globally or perapplication, per-device. It costs $AUS27.

Last year, Apple introduced an iOS 8 feature called Continuity.

For devices on the same Wi-Fi network, the feature allows iPhone calls to be made and received on an iPad (or a Mac).

The calls go through the iPhone, but you use your iPad to make and receive calls. Messages can also be handled this way.

For Windows, look at X-Mouse Button Control (www.highrez.co.uk/downloads/XMouseButtonControl.htm).

Speech recognition is available on the iPad. When the keyboard pops up, there is a small microphone icon on the left of the space bar. You press this and speak.

The transcription is done in the cloud, so you need internet access. It works in languages other than English if these are installed in your system as â&#x20AC;&#x153;keyboardsâ&#x20AC;? in â&#x20AC;&#x153;Settingsâ&#x20AC;?â&#x20AC;Ś â&#x20AC;&#x153;Generalâ&#x20AC;?.

Dragon Dictation app is another option. You can select another language within the app â&#x20AC;&#x201C; it doesnâ&#x20AC;&#x2122;t depend on the keyboard settings. It works very well and also does its translation in the cloud. However, you need to send or copy and paste the recorded text into other apps.

In both cases, you need to divide your work into chunks of about 30 seconds, to allow the transcription to do its work.

Lightning strikes

Technology Q

means

Independence

Q

Productivity

Q

Connection

Where do you start?

!

One solution is to leave the Lightning cable plugged into the iPad and use a USB extension cable to plug into the power source or a hub. Manipulating USB connections is easier than the small Lightning plug and less costly.

Another option is the Lightning to 30-pin Adapter (0.2 m) (http://store.apple.com/us/product/MD824ZM/A/lightning-to30-pin-adapter-02-m?fnode=3a). You would also need a 30 pin to USB cable to plug into the power supply. The adapter would need to remain plugged into the iPad. A further option is The Trunk (see picture) (http://ilovehandles.com/ products-page/iphone/trunk/). It could make it easier to position the Lightning connector. A micro USB version is also available.

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

HOT TOPIC

4 E 3 . . 4

I R P 8 3# O / 3 E

# . ; OE = / . . @ 3 > .

I I

@ # 4 3 .

3# I R

The reform process taking place across the disability sector has seen many positive changes aimed at empowering people with disability by providing greater choice, control and flexibility in how people manage their funding. The changes provide an opportunity for people to directly manage funding. Through this arrangement, the funding is paid directly to the individual and not the service provider. There is of course accountability provisions that must be followed; however, it is the individual who directs how support is managed and paid for.

Another NSW government initiative is My Choice Matters.

It offers projects to help people get the most out of personcentred supports with four focus areas: getting more skills; sharing stories, ideas and information; becoming a leader; and running projects. It provides up to $5000 to assist individuals gain new skills. For more details, visit: www.adhc. nsw.gov.au/about_us/strategies/life_my_way/getting_prepared

) . I

Apart from these two options, there is not a great deal of formal support available. There are resources online, such as the Direct Payment Agreement Handbook under the Ageing Disability and Home Care (ADHC) direct payment model.

It covers all of the areas of becoming an employer and hiring support workers. ADHC staff are available to assist with providing information. For more details, visit: www.adhc.nsw.gov.au/about_us/strategies/life_my_way/direct_ payment_agreement

The New South Wales (NSW) government has provided funding to help build the capacity of people wishing to pursue direct funding in preparation for the NDIS. One of those projects is called My Voice, which provides one-on-one training on self-managing individualised budgets. Once you have been approved for direct funding, you are able to use part of your funding to cover the cost of the training.

E @ .

3

The Sector Development Fund has been established to assist the disability sector, including people with a disability, to transition to new arrangements for disability support under the NDIS. Within this program, there are a few resources to assist people. My Place â&#x20AC;&#x201C; a Guide to Engaging Your Own Support Staff provides useful guidelines on self managing funding. It provides a comprehensive resource booklet covering topics such as employing your own support workers, preparing a budget, plans and rosters, and advertising for support workers. For more details, visit: www.ndis.gov.au/sector_ development_fund_information and www.ndis.gov.au/sites/ default/files/documents/MyPlace_EngagingBooklet.pdf

.

If you want to pursue direct funding and do not want to manage the administrative details, then you might want to consider engaging an organisation that covers payroll, superannuation and insurance. Living My Way is such an organisation. You are left to recruit care workers, organise rosters and sign off on time sheets that get forwarded onto Living My Way. They organise the payments to carer workers.

For further details, visit: www.allowance.org.au A great new social enterprise that has just been developed is HireUp. HireUpâ&#x20AC;&#x2122;s online platform enables people with disability to find, engage and manage their own support workers. As the legal employer of the support workers, HireUp takes care of the legal, administrative and insurance burdens involved in direct employment, leaving clients free to schedule, train and manage their own support workers. HireUp applies a six per cent fee to all transactions processed through the site.

For more details, visit: www.hireup.com.au www.scia.org.au &

FEATURE

# 3 3# )QGQ<- C OP

!" #

$ % # & heralding a new era in disability services as it rolls out across the country.

Helen Borger

P

ast disability services have been described as a patchwork of supports, beholden to government budgetary cycles, and delivering more to those who scream the loudest. But now the NDIS is here it is expected that service provision will be more accessible and coordinated for more people.

The federal government says it is 100 per cent committed to the NDIS, but the federal Minster for Social Services Scott Morrison and Assistant Minister for Social Services Mitch Fifield say the NDIS faces a $7 billion shortfall. Reportedly, the governmentâ&#x20AC;&#x2122;s answer to this problem is to cut welfare spending. But whose welfare?

Will the government give the NDIS with one hand, while reducing the Disability Support Pension (DSP) with the other? Assistant Minister Fifieldâ&#x20AC;&#x2122;s spokesperson would not be drawn on welfare cuts; instead, pointing to the recent introduction of government-appointed doctors to assess new DSP claims, compulsory participation activities for people aged under 35 who can work for more than eight hours per week, and Minister Morrisonâ&#x20AC;&#x2122;s desire for a sustainable welfare system.

The recently elected Spinal Cord Injuries Australia (SCIA) President Joan Hume is unimpressed with the governmentâ&#x20AC;&#x2122;s response. â&#x20AC;&#x153;Without the full roll out of the NDIS, the cost estimates of the scheme are merely that: estimates â&#x20AC;Ś Given the Abbott governmentâ&#x20AC;&#x2122;s failure to sell its last budget to the Senate and the community, it is very easy to scapegoat a vulnerable target: people with disabilities,â&#x20AC;? she says. â&#x20AC;&#x153;It was always my understanding that the NDIS was to be funded in part by the Medicare levy of an assured annual $3 billion, that the scheme would 10

accord magazine

generate a $32 billion increase in GDP and would create 220,000 jobs.â&#x20AC;?

Despite the budget debate, the NDIS rollout in trial sites continues. The National Disability Insurance Agency (NDIA) points out that the scheme cannot be all things to all people, but it will provide â&#x20AC;&#x153;reasonable and necessary supportsâ&#x20AC;? so people with disability can live an â&#x20AC;&#x153;ordinary lifeâ&#x20AC;?.

' !

Following a recent citizenâ&#x20AC;&#x2122;s jury that examined evidence from NDIS participants about the schemeâ&#x20AC;&#x2122;s effectiveness and which was run by People with Disability Australia (PWDA), a report is due to be released at the end of April. Also, the federal government is developing a framework to ensure NDIS services are safe and effective.

Meanwhile, the February 2015 NDIA sustainability report says many participants are pleased with the scheme: 73 per cent rating their experience as â&#x20AC;&#x153;very goodâ&#x20AC;? and 22 per cent rating their experience as â&#x20AC;&#x153;goodâ&#x20AC;?. Also, 11,000 plus participants have had plans approved.

At the grassroots level, Simone Stevens told the Federal Parliament Joint Standing Committee on the NDIS last year that the scheme had transformed her life. â&#x20AC;&#x153;â&#x20AC;Ś I was getting 21.1 hours before, and now I am getting 42 hours. I am doing a lot more. I can be more flexible,â&#x20AC;? she said. As examples, she told the committee that the NDIS funding enabled her to work in Melbourne and visit a friend she had not seen in 19 years.

Amanda Samek also welcomed the NDIS. â&#x20AC;&#x153;I had a few hiccups at the start but patience and

FEATURE

Joining the roller /

?

R #

/ I

/ 4 3# 3# # I @ 3#

II 3 4 R

G / # #

G / 4 3# # I 3 3 L # / 3 > @

perseverance sorted them out,â&#x20AC;? she told the Joint Standing Committee last year. â&#x20AC;&#x153;â&#x20AC;Ś I could not get in or out [of bed] â&#x20AC;Ś so [the NDIS planner] ordered [a new] bed. I have now got a bed that lifts me up and down.â&#x20AC;? The planner also arranged for decking, so she could get into the backyard. â&#x20AC;&#x153;I feel normal when I have got visitors because I can â&#x20AC;Ś go out in the backyard with them,â&#x20AC;? she said.

Tabi Sendaâ&#x20AC;&#x2122;s initial experience with the NDIS has also been positive. She has been able to hire two support workers to help her achieve goals important to her; for example, rearranging her bedroom, facilitating her participation as a non-skating roller derby official (learning to do the scoring) and supporting her on campus at university â&#x20AC;&#x201C; when she is able to attend.

However, Tabiâ&#x20AC;&#x2122;s mother, Naomi Anderson, points to frustrations with the NDIS, such as delays in

waiting for basic items, such as adjustments to Tabiâ&#x20AC;&#x2122;s existing hoist, a single point walking stick and the correct ankle and foot orthoses.

She has also experienced difficulties at the NDIS and Health Department interface. As Tabi is susceptible to fractures, before entering the NDIS she had been receiving ongoing physiotherapy and gym work under her Victorian Individual Service Plan, to help maintain her function.

But since entering the NDIS she has been told that the NDIA will only provide 10 physiotherapy sessions and she will need to seek ongoing services via the Victorian Health Department. But Naomi says the Health Department does not provide the services Tabi needs, and she is now trying to resolve the issue via the NDIA. Tabiâ&#x20AC;&#x2122;s disability is permanent; she needs the ongoing physical intervention, Naomi adds. www.scia.org.au 11

Get your free samples

NOW

“I can go places I never dared to before” Christophe, SpeediCath® Compact Male catheter user

An extreme sports fanatic. Christophe says SpeediCath Compact Male catheters discreet design and secure packaging make it a natural fit for his active lifestyle.

Whether he’s kite-surfing, paragliding, skiing, quad-biking or sailing, Christophe often finds himself in some out-of-the-way places – places he wouldn’t dream of being in if it wasn’t for SpeediCath Compact Male catheters unique capabilities. Its ease-of-use, its discreet design and solid construction have rapidly made it indispensable. He says: “SpeediCath Compact Male has given me back my joy in my sports.”

GET YOUR FREE SAMPLES AT coloplast.com.au/sccm | 1800 653 317 | au.care@coloplast.com

The Coloplast logo is a registered trademark of Coloplast A/S. © 2015-02 CON370. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.

FEATURE Speaking about mainstream services generally, the Assistant Minister’s spokesperson says that, where appropriate, NDIA planners should be supporting participants to access mainstream services. Nevertheless, COAG is considering the experience of the trial sites to determine whether lessons can be learned, the spokesperson adds.

At the other end of the spectrum, however, others would like the NDIA to limit the provision of supports. “I don’t believe it should fund decking, iPads, sporting fees, etc. These are items that should be saved up to purchase just like the rest of us do,” says correspondence to the Joint Standing Committee.

Assistant Minister Fifield’s spokesperson disagrees, saying a person’s circumstances are unique and relatively modest investments in technology can often have a significant impact on a person’s independence and participation.

SCIA CEO Peter Perry agrees: “From both an equity and financial point of view, such things as iPads and gym memberships, when assessed [as reasonable and relevant] should be provided, as these will assist people towards greater selfefficacy and less reliance on welfare and other social support systems.”

Personal care For a number of people with spinal cord injury, one of the most significant services provided under the NDIS is personal care. At the moment, care agencies can charge $36.70 per hour for this service. Is this enough?

“Anecdotally, it is insufficient and must change.

If it doesn’t, organisations will withdraw from the market, and this will lead to either a shortage of services, or a race to the bottom in terms of quality,” says Peter.

Joan agrees: “…The quoted fee appears not to be flexible enough to cater for those who need daily care including weekends and public holidays.

The pay rates vary according to day, evening overnight, and weekend charges.”

Nevertheless the Assistant Minister’s spokesperson remains confident about the price, saying “When the market matures, it is the intention that prices be deregulated and no longer set by the Agency at a time when the market is mature enough to ensure supply”.

The NDIS is set to be a life-changing service for many people. Let us hope that as time rolls on it lives up to its expectations. ■

I’VE G OT THE SUPPORT I NEED TO L IVE H OW I WANT TO LIVE Phone1300 272 273 or visit arcare.com.au

G# # .

3 / 3#

3 I I > / 3 3 4 I [

/

II 3 \

FEATURE

Paralympic pioneer remains

8 :-O8 E -<

7# : > 4 # % >

@ 3#

3

I I 4 3# I I 8 3 '

# / 3

3

Joan Hume, President, Spinal Cord Injuries Australia

I

first met Charlene over 40 years ago, not long after my own accident, when she came to train in and demonstrate archery at the oval just beside the Royal North Shore Hospital in Sydney.

Newly injured patients like me were taken down to the oval from the spinal unit to be introduced to wheelchair sports as a way of encouraging us to keep fit and active post hospital. While her sporting prowess may have been completely lost on me, Charleneâ&#x20AC;&#x2122;s skills in archery, javelin and swimming had led her to competing all over Australia. She had even participated in one of the earliest Stoke-Mandeville Games in England, the very Games that launched the Paralympics.

How Charlene came to be competing in archery at Stoke-Mandeville gives us a fascinating glimpse into her personal story of recovery from a horseriding accident at age 14 and the history of the care of people with spinal cord injury (SCI), long before specialised units were established in Australia.

G# +I 3 On school holidays in Bowral in 1946, Charlene was racing a friend across a paddock. In the exhilaration of the chase she didnâ&#x20AC;&#x2122;t notice a lowhanging branch which knocked her backwards off the horse onto the ground. She had broken her back at the T5 level. Initially admitted to the then tiny Bowral Hospital, her distressed parents consulted medical friends and she was moved later to Lewisham Hospital.

rehabilitation in the way we understand it today.

It was very much a case of nursing with love, and trial and error. In fact, the extremely primitive method of bowel care she was taught then was to have serious complications later in life necessitating intrusive surgical intervention.

C #

After some months, she was sent home to her parentsâ&#x20AC;&#x2122; care in Double Bay. Her local school, Ascham, just up the street, was completely inaccessible and could not (would not?) accommodate her needs as a wheelchair user.

So she became a student of the Correspondence School in William Street, East Sydney. Every week she was sent lessons by post and her work was supervised by a home tutor. She studied this way to the Leaving Certificate without sitting the final exams; her well-meaning, unchallengeable doctors deemed her experience of disability too painful and â&#x20AC;&#x153;traumaticâ&#x20AC;? to cope with the stress of written exams.

Because she lived so close to her old school, Charleneâ&#x20AC;&#x2122;s friends never neglected her. She laughingly remembers frequent Coca Cola and chips parties which â&#x20AC;&#x153;ruined our teethâ&#x20AC;? but helped to cement decades of friendships and social outings.

]

Charleneâ&#x20AC;&#x2122;s journey to Stoke-Mandeville followed a chance meeting of her father with Lord Nuffield (William Morris, 1877-1963). Nuffield was a philanthropist (and founder of the Morris car In the mid-1940s, Lewisham was a medium-sized company) who had funded over 5,000 iron lungs general hospital serving the local community of during the polio epidemics in the 1940s and inner western Sydney, run by the nuns of the Little 1950s in Britain. He invited Charlene to attend Company of Mary. Although the quality of nursing the Wingfield-Morris Orthopaedic Centre in and medical care was deemed to be excellent, there Oxfordshire to receive physiotherapy was no expertise in SCI management, let alone and rehabilitation. $F

accord magazine

FEATURE

7#

.I 3

4 .. > K

# 4

.

7# : 4 3# # @ 3#@ .I

> " I R

In 1950 Charlene, now 19, her mother and a nurse sailed for England. At that time, there was no such revolutionary concept as a collapsible wheelchair, let alone an accessible ship. Charlene, naturally energetic and exuberant, had to surrender what little independence she had fought for, and submit to being pushed around everywhere.

When she duly arrived at the Wingfield-Morris Centre, her x-rays had been lost en route somewhere but after treatment commenced, it soon became obvious that the therapy was completely inappropriate for her type of disability. The focus of this Centre was polio not SCI. Charlene was sent to Stoke-Mandeville instead.

7 . I

The National Spinal Cord Injury Centre at Stoke-Mandeville was founded in 1943 by Sir Ludwig Guttmann, a German Jewish ĂŠmigrĂŠ who had fled Nazi persecution in 1939. This Centre, now one of the oldest and largest in the world, pioneered SCI care and rehabilitation. Later, it established the forerunner of the Paralympic Games. It was here that Charlene mastered transfers, back strengthening exercises, driving a car, and a range of sports and archery â&#x20AC;&#x201C; her passport to Paralympic sport back home. In 1951, she competed in the Stoke-Mandeville Games in archery before returning to Sydney.

Back home, the family imported a modified car for her and she was off. Now totally liberated

in transport and also sporting a new-fangled collapsible wheelchair, Charlene trained in shorthand and typing and commenced work for the Blood Bank in York Street. And yes, she could park on the street right outside all day without being booked.

She met her future husband Eric when she volunteered at the Spastic Centre in Mosman and they had two children, even though Guttmann had warned her against childbirth claiming that it would ruin her kidneys. The first child was born by caesarean and the second child by natural childbirth under the surveillance of six doctors (and her kidneys survived). She learned how to manage the children as littlies by hard won experience and with the guidance of another wheelchair mum.

:

.

3#

Over two decades, Charlene competed nationally in swimming, javelin and archery winning several gold medals. As her physical strength for sport began to wane, she turned her attention to the local Access Committee and Shetland Sheepdogs in obedience trials. She is one of the only accredited dog trainers in a wheelchair in Australia and has won many awards for this accomplishment.

This wonderful, wise, big-hearted, resilient woman was a joy to meet. In 2006, she was awarded a Medal of the Order of Australia for services to people with disabilities. â&#x2013; www.scia.org.au 15

FREE TO ATTEND

YOUR CHOICE, YOUR CONTROL Supporting inclusion and independence with Australiaâ&#x20AC;&#x2122;s foremost exhibition of aids, equipment & allied services.

On display will be the latest in aids, equipment and assistive technology, as well as options for mobility, services and lifestyles. The event is open to visitors of all ages, including those with a disability, seniors and their families, friends and carers.

Free Clinical Program for all interested including Occupational Therapists, Physiotherapists, Rehab Engineers, Allied Health Clinicians, Nurses, Case Managers, Carers and Medical Professionals. This is also a great opportunity to collect CPD (Continuing Professional Development).

New for 2015 â&#x20AC;&#x201C; sessions dedicated to consumers and families.

International speakers include: NZ

USA

Amanda Hebben Manager, Durable Medical Equipment (Sydney only)

USA

Magdalena Love Clinical Education Specialist, Permobil

USA

Matt Hodge Executive Vice President, Eden/Star Cushion

USA

Tina Roesler Director, International Sales & Education, SDL/TiLite

Tricia Garven Clinical Applications Manager, SDL/ROHO

SYDNEY

BRISBANE 7 May 2015

13-14 May 2015

Royal International, Convention Centre

Grand Pavilion, Rosehill Racecourse

REGISTER NOW Phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au ATSA Independent Living Expo

WORKFORCE

G# 3

8 / RY I .

3

3 3 3^

/ @ 3

3 3 Stephen Lowe, Disability Employment Manager, Spinal Cord Injuries Australia

Ben Ackland signed up for a â&#x20AC;&#x153;Mystery Bus Tourâ&#x20AC;? in October 2009 ready to enjoy whatever the day had in store.

â&#x20AC;&#x153;I wanted a job in the legal profession. But if I couldnâ&#x20AC;&#x2122;t get one, I was happy to do something else. I just wanted a job,â&#x20AC;? he says.

The tour had been organised by Austin College at the University of New England (UNE), where Ben was studying a Bachelor of Arts and Bachelor of Laws at the time. The mystery destination turned out to be Green Valley Farm, a holiday/ amusement park near Tingha in New South Wales.

Living a life

Ben and his university friends took advantage of the attractions and amusements at the park, and after lunch that day he joined his friends and other park goers jumping and doing backflips on a large inflatable jumping pillow. Critically, on his second backflip, he landed on his head and sustained C5-6 incomplete quadriplegia.

8 @ 3# R R / R

3# 4 > [E ^3 3 R 3# . I

Z 3 # II

3 \ Ben recalls the pain as other people kept jumping on the pillow and a male voice telling them to â&#x20AC;&#x153;get off, get off the pillowâ&#x20AC;?. Soon after, he was taken via Tamworth Hospital to the Royal North Shore Hospital in Sydney, where he underwent surgery and spent his initial recuperation.

From Royal Rehab to UNE Following extensive rehabilitation at Royal Rehab in Ryde and after he returned to his home town of Canberra, Ben went back to UNE and graduated with a law degree in 2012. He then came back to Canberra and studied a Graduate Diploma of Legal Practice (GDLP) at The Australian National University.

Ben applied and was shortlisted for jobs at the Attorney-Generalâ&#x20AC;&#x2122;s Department and the Department of Human Service. Also, he successfully reached the interview stage but was not shortlisted for the Australian Tax Office and Department of Health and Ageing.

Putting his money where his mouth is, Ben then went to the SCIA Independence Expo in April 2014, where he met up with the SCIA Workforce team to discuss his work options. â&#x20AC;&#x153;I wanted to earn an income and live independently â&#x20AC;&#x201C; to do the things I wanted to do, such as travel, live where I wanted to and to live my life,â&#x20AC;? he says.

Ben began working with SCIA Workforceâ&#x20AC;&#x2122;s Elena Pascoe and Kay Farrelly to develop a career plan.

Together they identified leads and networks to explore and recognised and responded to some of the challenges to be faced on the way. These included employer perceptions of people with a disability, the ability of people with a spinal cord injury to perform to the same level as an able bodied person and overcoming access issues getting to and around the workplace.

Career on track After a few months, SCIA Workforce met with HealthShare NSW to discuss Ben and his willingness to gain employment in an entry level role as an Administration Officer, keeping in mind his goal of developing a career.

An interview was arranged and he was successful in winning the position. Within three months, he was promoted to Project Officer in Clinical Services.

Ben works full time and travels an hour each way to and from work â&#x20AC;&#x201C; a total of 10 hour days. He also fits in wheelchair rugby training and playing with the Rugby NSW GIO Gladiators. â&#x20AC;&#x153;I am doing what I want to do,â&#x20AC;? Ben says. As for the knock backs along the way, â&#x20AC;&#x153;I donâ&#x20AC;&#x2122;t take them personally â&#x20AC;&#x201C; it happens to everyone,â&#x20AC;? he adds. â&#x2013;

8 R

COMING SOON

Less steps to perform

Less waste to dispose of

Less noticeable

Less to bring

Less to store at home

The catheter and bag set reinvented Introducing SpeediCath® Compact Set - for simpler everyday catheterisation

Small enough to fit in a pocket or handbag, SpeediCath® Compact Set redefines the concept of the integrated catheter and bag solution.

• • •

The only compact and discreet catheter with an integrated and sterile bag Simple and intuitive for everyday use in and out of the home A unique coating for instant and easy use

Available later this year in both male and female versions.

Want to try it?

Sign up for free samples now at coloplast.com.au/sccs and you will be contacted by a local representative.

1800 653 317 | au.care@coloplast.com

The Coloplast logo is a registered trademark of Coloplast A/S. © 2015-02 CON371. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.

IN PRACTICE

U

N

4 U

/

3 I I 4 3# /

3

]

4 /

3 @ I .

3 N Sean Lomas, Policy and Advocacy Manager, Spinal Cord Injuries Australia

Recently an ABC Four Corners episode focused on cases of abuse against people with disabilities living in some residential centres. It showed many cases where people were exposed to sexual and physical assault.

These assaults were conducted by individuals, but what made the story all the more shocking was that there were little or no systems in place to screen out the potential perpetrators of violence and abuse, protect the residentsâ&#x20AC;&#x2122; day-to-day safety and, if an assault happened, work to punish and prosecute the offenders. The offenders would often be moved out of one home and placed into another. The system appeared to have no answer for how to stop these people.

! $$

On top of the violence, abuse and neglect, are the deaths in supported accommodation. One of the first comprehensive reports on the subject was a Victorian Coronerâ&#x20AC;&#x2122;s report which stated that 272 deaths happened in the twelve months between 2010 and 2011. That is more than five deaths per week. Yet the situation largely goes unreported and unrecognised.

G# 4

3 .

I 3

3 3# I 3 I I 3 3

In New South Wales, the Ombudsman reported in 2013 that the average age of death in state-funded disability accommodation was 30 years younger than the general population. The Ombudsman also stated that in their opinion many of the deaths had been preventable if the accommodation providers had understood more about disability and associated health risks.

Turning a blind eye Over the years, the Spinal Cord Injuries Australia Policy and Advocacy team have come into contact with, and successfully advocated for, people experiencing violence, abuse and neglect in supported accommodation. The reasons for violence and abuse are complex. It can be a dominating staff member who likes to feel powerful by robbing people of their dignity. It can be managers who turn a blind eye to what is happening in their homes or they participate in the degrading behaviour. Also, it can be other residents who may have complex needs and are housed inappropriately with people who they cannot relate to. In our experience, violence, abuse and neglect can be present in homes run by the government, community organisations or religious organisations.

Under the microscope After much wrangling in the Australian Senate, the request for a national public inquiry into violence and abuse against people with disability in institutional and residential settings was passed. This much-needed inquiry is looking at the following: What has happened in some group homes? What should be done to prevent violence and abuse? How can this be achieved? What is the role of the National Disability Insurance Scheme (NDIS) and National Quality Framework in driving safety across the sector?

Submissions to the Senate inquiry closed on 10 April. A full list of the submissions received is available via the inquiries webpage:

Home Care Services Quality home care and support, â&#x20AC;&#x2DC;Working in Partnershipâ&#x20AC;&#x2122; as your trusted advisor: â&#x20AC;˘ Individualised support plans developed to suit your needs â&#x20AC;˘ CSP packages â&#x20AC;&#x201C; comprehensive budget support systems â&#x20AC;˘ RN support â&#x20AC;˘ Approved attendant care provider: LTCS, ADHC/FACS and multiple other funders AINs and RNs are available for 1 to 24 hrs Call us to discuss your requirements: Alliance Health Home Care Services Tel: 9310 6511 Email: homecare@alliancehealth.com.au Website: www.alliancehealth.com.au

Accredited

Wo r k i n g i n p a r t n e r s h i p www.scia.org.au $&

DAILY LIVING

@ I

W3

@

K I 4 3# 3#

@ 3# < // I .

Life with a physical disability is often sedentary and can lead to other serious conditions, such as obesity, cardiovascular disease and diabetes, placing extra strain on someone who is already coping with a serious and life-long disability.

Moreover, exercise is a vital part of ongoing health maintenance. By encouraging good health and preventing secondary conditions from developing, the cost and burden of ill-health on the person with the disability, their family and the health care system can be reduced.

However, late last year, the Burn Rubber Burn exercise program, which is specifically designed for people with disabilities, faced the axe. At the time, it was managed by the Police Citizens Youth Clubs (PCYC) and run in accessible gyms at affordable prices with a track record of helping people with a range of physical disabilities to live healthy and independent lives. Despite the programâ&#x20AC;&#x2122;s success, the PCYC could no longer afford to manage the program.

Saving the day Closing the program would mean its clients, such as Ben Meoli, who was born with motor paraparesis and uses a wheelchair, would have few opportunities to exercise. Ben is 20 years old and, like many young men his age, he needs to exercise. But he canâ&#x20AC;&#x2122;t use gyms designed for able bodied people.

Spinal Cord Injuries Australia (SCIA) became aware that the program was facing closure. After seeing the results it was having, SCIA decided to step in and fund the program, equipment and staff.

(

For people like Ben, this news was a relief. â&#x20AC;&#x153;Iâ&#x20AC;&#x2122;ve been coming to Burn Rubber Burn for nine years â&#x20AC;Ś Itâ&#x20AC;&#x2122;s an essential part of my life and there arenâ&#x20AC;&#x2122;t many other exercise options for people with disability,â&#x20AC;? he says.

20

accord magazine

DAILY LIVING â&#x20AC;&#x153;I come â&#x20AC;Ś three times a week. Itâ&#x20AC;&#x2122;s great because the exercise machines are accessible, I can use the parallel bars and do some walking, and trainers are there to show me the right exercise techniques to use.

!

Ben is hoping to lose some more weight, get a folding wheelchair and start driving. â&#x20AC;&#x153;That will take some pressure off mum who has to drop me off all over the place. Iâ&#x20AC;&#x2122;ll be able to start dropping her off.â&#x20AC;?

E3^

I 3 @ . @ 3#

^3 .

3# + I

@ I I 4 3#

/ 3

: > I 3 `

â&#x20AC;&#x153;

â&#x20AC;&#x153;

â&#x20AC;&#x153;I feel stronger and can transfer in and out of my wheelchair easier. Itâ&#x20AC;&#x2122;s nice to get out of the house and see everyone at the gym. For me, the program means having a go at new things and improving bit by bit.â&#x20AC;?

Burn Rubber Burn joins another successful and established exercise therapy program at SCIA â&#x20AC;&#x201C; Walk On â&#x20AC;&#x201C; and offers support from highly trained staff in a safe exercise environment to help people maximise their health and fitness goals. â&#x2013; Visit ! to donate and help ensure Burn Rubber Burn stays open well into the future and people with a disability, like Ben, get the chance to improve their health, well-being and independence Start your journey to improved health and ! " "# % & & ' " ! # * a free two-week trial.

At Burn Rubber Burn we help people with all 3 I @ / # 3# W3

Choose from: â&#x20AC;˘ â&#x20AC;˘ â&#x20AC;˘ â&#x20AC;˘

5 visit pass $50 (use within 3 months) 1 month $45 6 months $250 12 months $400

Available at: â&#x20AC;˘ â&#x20AC;˘ â&#x20AC;˘ â&#x20AC;˘ â&#x20AC;˘

Bankstown Campbelltown (Minto) Eastern Suburbs (Daceyville) Penrith Sutherland

FREE

2 week trial for new clients

Improve your health, wellbeing and independence at Burn Rubber Burn www.scia.org.au

-. / // /

I# $% %$& ''( @ . @ .

www.scia.org.au 21

THE F5 CORPUS 速 VS STAND AND DRIVE

Experience it at permobil.com

O F F I C I A L AU S T R A L I A N L AU N C H AT:

Jason Dufour Permobil user since 2009

TRAVEL

O 3

/ R

I

3# .

3#

. 3 / R

3# - 3 8

& 4 K 3 3 3 @ 3#

3 .

Jerome Wong

I had always wanted to ride a motorbike across South East Asia, particularly after watching the Long Way Round series with Ewan McGregor. After returning from my 2009 Asian road trip, I promised myself that one day I would ride around the world.

However, that dream was shattered a few months after getting back home to Australia. I fell off a cliff and broke my back, sustaining T11 paraplegia â&#x20AC;&#x201C; with no use of my lower body.

Two years went by, but the dream of conquering the world did not pass me by.

I met Jess Bray, who was on holidays from the UK. As our relationship grew, I told her that one day I would show her the real Australia. Six months later we were off in my Patrol 4x4, travelling the less explored parts of the country. We drove to Cape York, Kakadu and Uluru â&#x20AC;&#x201C; and even across the Simpson Desert.

It was then that I told Jess of my dream to take on the world; and before we knew it, we had sold the Patrol and bought a 1994 Toyota Land Cruiser Troop Carrier to drive around the world for one year. It took 12 months to rebuild the tired old vehicle and deck it out â&#x20AC;&#x201C; so we could live in the back. It was a bit trickier designing the vehicle so it worked for me, including hand controls and an intermediate transfer board. But after thinking it through and a little bit of trial and error, it was perfect.

4 . / .

4 3# 89?F'^

G K R 3 / 4 4 .I 3 3 3# 8@ #

3 /

9 c 3 > 7 3 8

Heading east Not long after, we set out with a little trepidation. Travelling east through Europe we entered Russia via Latvia.

Russia leaves a lot to be desired when it comes to disabled access. It is virtually non-existent. But we came prepared.

By the time we hit Central Asia (Kazakhstan, Kyrgyzstan, Tajikistan and Uzbekistan), we pretty much gave up looking for any kind of hotel that had disabled access. Bumming up stairs and assembling my homemade travel commode became second nature.

Central Asia was a unique experience, from climbing 4,700 m mountain passes in the Pamirs in Tajikistan to exploring the ancient Silk Road cities of Uzbekistan.

Itâ&#x20AC;&#x2122;s all virtually unknown to the western world. Nothing can prepare you for its beauty, isolation and character.

We shipped the Troop Carrier to our starting point â&#x20AC;&#x201C; the UK, and there we spent a few weeks sorting out visas, visiting The trip did not come without hardships. family and friends and organising my I visited nearly seven hospitals because of medications and continence equipment. a persistent urinary tract infection (UTI),

our vehicle was broken into in Athens and we were moved on by men with AK-47â&#x20AC;&#x2122;s in Tajikistan because we were camping too close to the Afghanistan border.

Fork in the road By the time we were back in Europe the UTI was still causing problems, so regrettably we had to call off the next leg of the journey â&#x20AC;&#x201C; we had planned to ship the car to Egypt and travel down the east coast of Africa to Cape Town.

We decided to continue from Greece and head north through the Balkans, taking in Albania, Macedonia, Bulgaria and Romania before heading back to the UK for Christmas via the Alps in winter.

We never finished what we set out to do, but we still covered 30,000 km through 25 countries over seven months.

In the end, Africa isnâ&#x20AC;&#x2122;t going anywhere, so we will be back.

For more on the trip, visit www.lostabound.com â&#x2013; www.scia.org.au

INFORMATION & RESOURCES

Empowered is a short film about James Gribble â&#x20AC;&#x201C; an avid golfer with quadriplegia. The film won the Most Online Votes category at the 2014 Nova Focus on Ability film competition. d 4 3 # 3# W . #

Empowered_717.html

Wheelchairmommy.com Priscilla Hartman Hedlin lives in Austin, Texas and has created a fantastic blog and website with information about being a mother with a spinal cord injury, style and fashion, food and cooking, and decorating.

U 3 www.wheelchairmommy.com

Back on Track is a patient handbook developed by the New Zealand Spinal Trust and the Burwood Spinal Unit. It is liberally dosed with stories and advice from past â&#x20AC;&#x153;graduatesâ&#x20AC;? of spinal services in New Zealand.

U 3 www.nzspinaltrust.org.nz/pub_backontrack.asp

Regain That Feeling: Secrets to Sexual Self-Discovery: People Living with Spinal Cord Injuries Share Profound Insights into Sex, Pleasure, ) * / $* ! #$ !

3

!

by Mitchell Tepper PhD. U 3

! " # dp/1505444993

7 8

"; < $ " = ! ! $ %

& Public Speaker by David Nihill. Standing in front of an audience used to be scary for the author â&#x20AC;&#x201C; but not anymore. He now regularly performs stand-up comedy.

U 3: www.amazon.com.au/Comedy-Habits-Become-Funnier-Speaker-ebook/dp/ B00S4F493C

!" ! >

* $$ !"

(' ? % ! 3 ! &

by Katie Ellis. This book looks at how disability is reflected in popular culture.

U 3 www.amazon.com/Disability-Popular-Culture-Community-Expressing/ dp/1472411781

New Mobility is a magazine and online website packed with information and resources on health, advocacy, travel, employment, relationships, recreation, media, products and more. Ninety percent of its writers live with disabilities.

U 3 www.newmobility.com

8

@ 3# I /

/ @ 4 @ . 3# 7E8 E @ .

7E <

/ ) 3

3 / 4 I

3 library.scia.org.au> $% %$& ''( . / E

3 3# / > 7E8 E @ .

3# # 3 7E @ I I > 3 @ .

.I #

@ 3 I 3# # 3 3 3> I /

7E <

4 / 3 3 I I 4 3# I

K

. / 3 > 3# @ .

7E @ / 3 3 / I#

$% %$& ''(> . @ .

3

!

! "

F

accord magazine

GOODS & SERVICES @ ! "

$ !"

Crytico has listings of mobility and access products and user reviews of them. Find out what others think about the wheelchair, hoist, vehicle modification and lots of other things youâ&#x20AC;&#x2122;re planning to buy. Go to www.crytico.com

By Owen Dawes, Permobil Australia Pty Ltd

Tailor made insurance Blue Badge Insurance is solely focused on developing and distributing tailored insurance products to people with disabilities and limited mobility, and to the businesses and individuals that support people with disabilities. Its initial products are comprehensive mobility scooter and electric wheelchair insurance, and it is now developing a car insurance policy for anybody who has a disability parking permit, with a particular focus on people with wheelchair accessible and other forms of modified cars. The Blue Badge Insurance Australia website says the company â&#x20AC;&#x153;is supported

by BBI Worldwide, an autonomous partner with considerable experience in insurance and financial services. BBI Worldwide provides intellectual property, mentoring, support and product knowledge to Blue Badge Insurance Australiaâ&#x20AC;?. In order to develop the best product, Blue Badge is seeking input from mobility parking permit holders.

To provide input, go to www.bluebadgecommunity.com.au/ blog/motor-insurance-questionnaire

" . / 4 /

3# / .

3 @ 4 # # I 3

$&!'> / O " Q ;I 3 / = O Q ^

I# I# 3# 3> [- / I

# 3# #3 3 # # # # I .I

3 @ I

/ / 4 3# 3# .

3 #

3

3# 4

\

#

!

PACK it up and GO! Portable people movers for travellers who need transport when they reach their destination. By car or train, boat or plane; fold them up and youâ&#x20AC;&#x2122;re ready to go.

I# I#

3 3# " . /

3 8 3# 3 @ 3# 4 )? #

3 / . I @ 3 + .I 3#

I 3

I. 3> " . /

3 I 3 3 I 3

3# I .

3 @ I 4 . / 3

E3

3

I # 3 / / > . /

3 # @ 3 .

The luggie â&#x20AC;˘ Americaâ&#x20AC;&#x2122;s top selling portable scooter â&#x20AC;˘ Folds up in seconds â&#x20AC;˘ Li-ion battery pack â&#x20AC;˘ Carries up to 140kg

The Buzz 3 & 4 â&#x20AC;˘ Unclips with the flick of a finger â&#x20AC;˘ Easy to lift into a car boot or caravan â&#x20AC;˘ Large or small battery options â&#x20AC;˘ Great value for money, from $1490

ATSA Independent Living Expo G

3# 3 3

> " . /

3 ..

3# 3 3 I / 3

3 3 3# 8G 8 E I

3 -+I > 3 < # < >

> : 8 > @

3# 8G 8 E I

3

-+I > 4# I " . / > 3# 4 / j" . / " 3 3 I^ 3 I 3# " . / 3

3 I / 3 # " . /

I 3 K 3 / 3# " . / I 3 4> .I 3 @ @ #

Literider PC â&#x20AC;˘ Entry level, lightweight powerchair â&#x20AC;˘ 5 easy to unclip sections â&#x20AC;˘ Compact and simple to use â&#x20AC;˘ Suitable for indoor or outdoor VISIT scootersaus.com.au or CALL 1300 622 633

" . / R @ 4 3

3 3# +I ) . 3 > 3 3 " . / 8 3 "3 3 > Q 3 ( k$ 8 > 7 3 > > $(F "# $ %(% F F &%&F ' F -. C4 O 4 I . / .

www.scia.org.au 25

THE F3 CORPUS 速

POWERFUL, MANEUVERABLE AND STABLE

Experience it at permobil.com

O F F I C I A L AU S T R A L I A N L AU N C H AT:

Emma Melissa Reyes Permobil user since 2003

CALENDAR

E OQ G<d -U- G $( MAY ' G# 8G 8 E I

3 -+I >

/

www.atsaindependentlivingexpo.com.au

$ ? $F G# 8G 8 E I

3 -+I >

www.atsaindependentlivingexpo.com.au

$F ? $!

F3# D 3 8

W :

@ E 7 8 E8> ) .

3 G# q

- c / 3# 3 > : 3 > 7

" !

?

- I I 7 E K )

$( 7

8

./ @ O 3 > : + . < 3 ;

=> 7c # < I / www.escif.org

MAY 21 - 22 7

2015 Biennial 7 @ > 3

C .I " R> www.carersnsw.org. au/conf2015

SEPTEMBER > & v $!

JUNE ! ? $$ %3# 7

@ 3# E 3

3 @ "#

< # / 3 : >

> 6 .

www.isprm2015.org

JULY & ?

8 3 7 ..

3 R

7 @

-+# / > " .

3# " R> : / > UE7 www.informa.com.au/conferences/healthcare-conference/australian-communityworkers-conference

6 QI d " 3 -+I

I3 ./ > "

# @ $> / 3s & I3 ./ > G 7 3 >

3 s $!

I3 ./ > 8 3

)

7 3 >

$

$ " " ! #

% ? $(3# 8 3 " 7 @ > " < # 7 3 > Q

3 @ > > 4 3#

www.aspc.unsw.edu.au

OCTOBER % ?

7 @ > " 3# 7

7 3 > 3 8 3 www.nhc.edu.au

AUGUST $ ? $F E 3

7

< # / 3 -

8

G # ; ?7<-8G $(=> I www.icreateasia.org www.scia.org.au '

POLICY & ADVOCACY

R @

EnableNSW Spinal Cord Injuries Australia (SCIA) is a member of the Assistive Technology Community Alliance of New South Wales (ATCAN). ATCAN comprises disability and community organisations that lobby for increased funding, removing or amending the current copayment policy, and other related issues concerning the EnableNSW Aids and Equipment Program (AEP). Although EnableNSW is undertaking some positive action to engage with its stakeholders to seek feedback updating its website and possibly engaging people with disability in reviewing equipment proposals during the procurement and tendering process, there are still people waiting for many months to receive assistive technology.

To discuss these issues, ATCAN met briefly with the New South Wales Health Minister Jillian Skinner in February. The Minister had been briefed on the issues prior to the meeting, and she was also aware that these issues had been longstanding and raised in the annual NSW Budget Estimates Hearings.

$3,000 CO-PAYMENT for a $15,000 wheelchair

G# :

3 II I

4# 3# ?I .

3

N 3 4 # # #3

R - / @ +I

%

accord magazine

During the meeting with the Minister, the ATCAN delegation highlighted equity issues concerning the EnableNSW AEP Policy Directive. The directive states that it will provide fair and equitable services to eligible people with disability. However, this directive has two different co-payment approaches for the AEP and the Prosthetic Limb Service (PLS). The AEP has a copayment of $100 for people with disability receiving a full pension for each year they access the service, compared with the PLS which has no co-payment for people with disability receiving the pension. And the PLS has a maximum co-payment of $200 for people who are working, compared with the AEP which has three separate

D R

4 3#

3# :

3

income bands. People in Bands 1 and 2 pay a maximum $100 co-payment, but people in Band 3 are required to pay a 20 per cent co-payment when provided with assistive technology costing $800 or more.

For example, a $15,000 wheelchair would require a co-payment of $3,000.

The Minister appeared surprised when the co-payment inequity was highlighted and asked EnableNSW for an explanation.

Following this it was announced that the EnableNSW Policy Directive would be reviewed. ATCAN has always advocated for the co-payment to be abolished, but if this does not eventuate, ATCAN wants the AEP co-payment amended so it is equivalent to the PLS co-payment.

G# - / " O 3#

3 .

3

@ .

/ 3 www.enable.health.nsw.gov.

#

" E@ 4 R 3

- /

> I

3 3 7E8 " 8 .

I 3 . / I#

$% %$& ''(

POLICY & ADVOCACY

Transport On February 16, NSW Disability Services Minister John Ajaka and former NSW Transport Minister Gladys Berejiklian circulated a media release that announced a package of improvements to be rolled out for customers with disability. The package includes accessible real-time public transport apps and a new electronic payment system that will replace the paper dockets for people using the Taxi Transport Subsidy Scheme (TTSS).

This announcement came after the NSW government carried out a review of wheelchair accessible taxis and subsidies during 2014. The review included a number of recommendations for the government and taxi industry to make services safer, easier and more comfortable for customers with disability.

8 3 I .

3

3 . @ GG

X

3 3# /K 3 @ 3 R / 34 3#

.

3

/

To develop the transport apps mentioned in the Ministersâ&#x20AC;&#x2122; media release, the NSW government sought input from the disability sector. Spinal Cord Injuries Australia (SCIA) staff and members were involved in this process. On the back of this consultation, the NSW government held a competition to develop real-time transport apps for people with disability. Thirtyseven entrants submitted apps, resulting in four of the apps being selected for further development. The apps targeted for release in May will be in addition to the five apps currently available for Sydney train, bus, ferry and light rail customers.

The electronic payment system for TTSS users, also mentioned in the media release, is currently the subject of talks between the NSW government and business.

Further, disability awareness training for taxi drivers will be improved, with plans

to make the taxi services more affordable, including investigating whether the TTSS subsidy could be increased.

SCIA continues to lobby the Transport Minister for an increase in the TTSS subsidy. The last, and only, subsidy amendment was in 1999. But since then taxi fares have increased by 60 per cent, which is having an ongoing negative impact on many people with disability who are transport disadvantaged.

Annual taxi fare review Spinal Cord Injuries Australiaâ&#x20AC;&#x2122;s (SCIA) Policy and Advocacy team has lodged a submission to the New South Wales Independent Pricing and Regulatory Tribunal (IPART) Annual Taxi Fare Review. It addresses a number of issues, which highlight the need for improved taxi driver training, and the cost of taxi transport and that any recommendations made by IPART to increase taxi fares will have an ongoing negative impact on people with disability. It also highlights the need for the TTSS subsidy to be increased (although IPART does not have the authority to amend the TTSS).

SCIAâ&#x20AC;&#x2122;s IPART and other submissions are available at: www.scia.org.au/policy-andadvocacy/submissions-and-reports

increase in taxi fares since 1999

GST campaign The Policy and Advocacy team at Spinal Cord Injuries Australia (SCIA) has continued its campaign to seek amendments to Goods and Services Tax (GST) laws. SCIA wants the laws to include an exemption for people with disability that is equivalent to the UKâ&#x20AC;&#x2122;s Value Added Tax (VAT) exemption â&#x20AC;&#x201C; which addresses the extra cost of having a disability.

SCIA has written to the GST Policy and Administration Subgroup (GPAS) outlining the proposal. The GPAS comprises senior representatives from state and territory governments and meets twice a year to consider applications for GST amendments.

Any GST amendment requires legislative changes and is a matter for the Australian Parliament.

Although there are specific disability-related goods and services that already have GST www.scia.org.au &

accord magazine

POLICY & ADVOCACY status, there are a number of $$> & I I # exemption anomalies. For example, when purchasing II I

replacement parts, including batteries, tyres, tubes and valves, for power wheelchairs I / 3# inner and scooters they include GST as they are @ O ./ generic products. Furthermore, there are many people with disability who are ineligible for state and territory governmentfunded home modification and maintenance schemes and therefore miss out on GST expemptions, or people with disability who are eligible for such schemes but choose to undertake home modifications and maintenance that include GST. Although the GST exemption is available on motor vehicles and their maintenance/repairs for people with disability who meet the eligibility criteria of needing a vehicle to access gainful employment, there are many other people who also could benefit from this exemption. These include people with disabilities who arenâ&#x20AC;&#x2122;t employed, and families with a dependent child with a disability. Also, custom-made adapted clothing to enable people with disability to dress/undress and be more independent isnâ&#x20AC;&#x2122;t GST exempt either.

Auto

It is hoped that when the GPAS meets in April this year it will recommend to the Australian Parliament that these muchneeded amendments be accepted. SCIA will keep you informed.

NDIS As of February 16 there was 500 days to go before the full rollout of the National Disability Insurance Scheme (NDIS).

February also saw an official update on the NDIS, with the National Disability Insurance Agency releasing its most recent quarterly report. The data shows almost 13,646 participants across the country.

Also, participant satisfaction remains very high with 95 per cent of participants rating their NDIS experience as â&#x20AC;&#x153;goodâ&#x20AC;? or â&#x20AC;&#x153;very goodâ&#x20AC;?; 11,029 participants had approved plans in place by the end of December; and the average package cost is $35,300, which is below the funding expectation of $36,750. â&#x2013; Join the disability advocates Facebookgroup: www.facebook.com/groups/disabilityadvocatesscia

REGIONAL ROUND UP

8

3 I I 3 % &' )&

& ! &:

!)& #

&' !$&+ ; ! & !

&< '+ =

I only joined the organisation last October, but already I have had the opportunity to visit

each of the regional offices and discuss the key issues facing people affected by spinal cord injury. In this short time, it has become apparent that access is a recurring theme â&#x20AC;&#x201C; access to facilities, support, information, education, training, jobs, transport and the list goes on.

But access is only one component â&#x20AC;&#x201C; the quality, reliability, credibility and the standard of what you are accessing is as much of a concern as access itself. Delivery of services in regional areas will continue to consider access in this broader sense.

With the introduction of the National Disability Insurance Scheme (NDIS) looming, Spinal Cord Injuries Australia is taking the opportunity to review our approach to regional service delivery and we are looking at ways to better support our members and clients. I hope to advise you in the next edition of Accord about the outcomes of this review.

ILLAWARRA | SOUTH COAST % &' )&

& ! &:

!)& '+ )& >

!

As many of you would be aware, Leah Ogden left SCIA just before Christmas last year to spend more time with family and travelling. Our thanks to Leah for her efforts across the Illawarra and South Coast Region over the past few years; she will be missed.

NORTHERN RIVERS % &' !()&

& * !)& '+ ) northernrivers@scia.org.au

Firstly, I would like to pay my respects to a long-standing member of Spinal Cord Injuries Australia (SCIA), Phyllis Harding, who passed away in January. Phyllis was very well known within her local community of Grafton and across many organisations in Northern Rivers and Sydney. Phyllis was an inspiration to all she met and will be remembered as a beautiful and helpful lady.

RIP Phyllis (see the tribute on page five).

I am working on getting some sporting activities happening at Coffs Harbour, and possibly Tweed and Lismore this year. So if you are interested in learning a new sport or retraining in your pre-injury sport, please let me know. Some of the suggestions I have had so far include archery and shooting.

Our dedicated Peer Support Volunteers Ray Munro and Mark Tanner are members of the Pistol Shooting Club in Coffs Harbour, with Ray also being an instructor/examiner. Sailing with Craig Scanlan from Sailability at Lennox Head has also been suggested. Craig, an SCIA member and sailing instructor, has offered us Tuesday and Sunday time slots at a cost of only $10 per person. Also, lawn bowls has been a favourite sport of some members, so I will be working with local bowls clubs about hosting wheelchair bowls days.

accord magazine

I will be sending out dates and details as events are organised, so if you have something you would like to do please let me know as these activities are for you.

Also, if you want to join your local sporting club and it is not currently accessible, please contact me using the details mentioned above. I can work alongside the clubs helping them to make their facilities and activities wheelchair accessible.

I look forward to hearing from you about activities or sports that you wish to have organised, as this is the year to get out and about.

Donâ&#x20AC;&#x2122;t forget your Peer Support Volunteers Donâ&#x20AC;&#x2122;t forget that we have three Peer Support Volunteers: Mick Parr, Ray Munro and Mark Tanner.

These three great men have extensive experience in living with spinal cord injury, using a wheelchair and accessing services and their communities. Mick is available to assist those living from Tweed to Maclean, Ray can assist those in Coffs Harbour and surrounding areas, and Mark can assist those in Port Macquarie and surrounding areas.

You can contact them direct on the following numbers: Mick 0428 329 587, Ray 0408 649 126 or Mark 0432 485 118.

REGIONAL ROUND UP NEW ENGLAND

CENTRAL WEST

? $ &G $ )&

& * !)& '+ && newengland@scia.org.au

'!

&% )&

& * !)& '+ )& ! >

! &

During the past three years, Steve Austin, Peer Support Worker for the Armidale region, has been working to get Transport for NSW to recognise that regional and metropolitan train stations are not the same when it comes to accessible train services. The major part of Steveâ&#x20AC;&#x2122;s work has been to get safe and accessible ramps made available at regional stations.

Z $ 8 When getting on and off regional trains, ramp access has been very hazardous for people in wheelchairs, as well as older people who need assistance to climb into carriages, the visually impaired, mothers with strollers and scooter users. Although the so-called accessible ramps are â&#x20AC;&#x153;standardâ&#x20AC;? on all trains, not all station platforms are â&#x20AC;&#x153;standardâ&#x20AC;?; for example, stations such as Armidale and Tamworth are old, with differing platform heights and widths. Steve can speak from experience as he uses these ramps in Sydney without problems because the platforms are accessible. However, in Armidale where the platform dimensions are different it has been a dangerous situation â&#x20AC;&#x201C; not only for himself but also for the railway personnel and other passengers on the platform.

One would think that there would be an easy solution to this problem: approach Transport for NSW, discuss the concerns with those responsible, reach an understanding based on the access standards governing public transport, and all would be put in place as soon as possible.

Well â&#x20AC;&#x201C; it doesnâ&#x20AC;&#x2122;t work this way. Steveâ&#x20AC;&#x2122;s numerous conversations with the â&#x20AC;&#x153;powers that beâ&#x20AC;?, media interviews with Steve and myself, letters back and forth to the former NSW Minister for Transport Gladys Berejiklian and her department, and representation to the NSW Member for the Northern Tablelands, Adam Marshall, resulted in very little action.

Nevertheless, Steveâ&#x20AC;&#x2122;s dogged commitment and knowledge about access standards eventually resulted in a positive outcome.

We thank the Member for the Northern Tablelands for taking Steveâ&#x20AC;&#x2122;s concerns to the Minister again. And as quoted from the latest correspondence from the Minister for Transport, â&#x20AC;&#x153;Several stations require customised solutions because of their platform height. This includes Armidale Station which will receive a unique two metre ramp by mid next year.â&#x20AC;?

Rural Spinal Cord Injury Service For a number of years now, people in regional New South Wales have been supported to resolve many clinical issues with help from the Spinal Outreach Service.

In the Central West region, it has been the Rural Spinal Cord Injury Coordinator, Sue Johnston, who has managed the implementation of the program. In addition to providing individual and case support, Sue has been responsible for coordinating the several spinal clinics held each year in the region.

To assist Sue in her role as a Rural Spinal Cord Injury Coordinator, Jeanette Clarey has been added to the team. Jeanette comes from a background in physiotherapy.

This complements Sueâ&#x20AC;&#x2122;s experience in occupational therapy.

As far as the multidisciplinary Spinal Outreach Clinics are concerned, two are scheduled for the Central West region this year. The first will be in Orange on Monday 23 and Tuesday 24 June. The attending specialist will be Dr James Middleton. Also, a clinician education session, the Ageing Workshop, will be held on Wednesday 25 June. The second outreach clinic will be in Dubbo from Monday 26 to Wednesday 28 October. The attending specialist will be Dr Sue Rutkowski. Also, a clinician education session, the Pain Workshop, is tentatively scheduled for Thursday 29 October.

Please note that these details may change. To confirm your participation or express an interest in participating, email sjohnston@chcs.com.au or jclarey@chcs.com.au, or phone (02) 6841 8508.

In February, I received a visit from Chris Peers at Megalong Positioning Service.

Chris showed me some information and a video of the latest technology used in the development of some of their products. The video can be found here: www.megalongpositioning.com.au/videos Of particular interest was the robotic scanning and manufacturing of custom positioning solutions. Using robot technology means that seating can be constructed with 100 percent body contact if required. The robotic arm works like a 3D sculptor (think the opposite to a 3D printer).

Megalong Positioning is based in the Blue Mountains and is expanding the coverage of its service in the Central West. One of the big pluses is that it provides a fully mobile service that can be provided in the customerâ&#x20AC;&#x2122;s home or wherever it may be required. For more details, phone Chris on (02) 4759 2800 or visit www.megalongpositioning.com.au

VICTORIA Nazim Erdem, AQA Victoria, nazimerdem@aqavic.org.au

Following the former Victorian Coalition Governmentâ&#x20AC;&#x2122;s restructure of the Access for All Abilities (AAA) program, the former Minister for Sport and Recreation, Hugh Delahunty, announced that Reclink Australia will be funded over the next two years to provide a first-point-of-call service to connect people with disability in metropolitan Melbourne to sport and recreation opportunities. Reclink will act as an agent on behalf of individuals with disability.

A range of new access maps and guides for Melbourne and regional Victoria have also been released. Among these, Lonely Planet has produced a free pilot online eBook called Accessible Melbourne. It has been produced by Lonely Planetâ&#x20AC;&#x2122;s Accessible Travel Manager Martin Heng, who has an incomplete C4 spinal cord injury. A copy of the book can be downloaded here: www.lonelyplanet.com/accessible-melbourne New Darebin access maps are also available, covering car parking, public transport, public toilets and pedestrian crossing points. For copies, visit www.darebin.vic. gov. au/en/Darebin-Living/Community-support/ PeoplewithDisability â&#x2013;ś (continued on page 35) www.scia.org.au

F

accord magazine

REGIONAL ROUND UP Destination Gippsland has also released a new tourist brochure. All tourism experiences in the brochure meet the following criteria: accessible parking, clear accessible path of travel to entrance, accessible entrance, adequate circulation space, accessible toilet facilities and accessible rooms (for accommodation).

For more information, visit www.destinationgippsland.com.au/ resources/ accessible-tourism

QUEENSLAND &% I)& '+ &: !&&& tony@qsss.com.au

The now-defunct Queensland LNP website had a glossy brochure about the Your Life Your Choice program, as well as a pilot initiative to support elderly parents who are also carers. I could go on about all the LNP cuts, but Your Life Your Choice in particular is an initiative worth keeping. It has given approximately 1,000 people with disabilities a greater say over their own support.

The Queensland ALP has two policies relating specifically to disability. They have a pledge to close a loophole discriminating against guide dogs and a pledge to sign up to the National Disability Insurance Scheme (NDIS). These policies are from 2013 and 2012 respectively.

I rarely agree with The Courier Mail but their christening of the Queensland election as a â&#x20AC;&#x153;Seinfeld Electionâ&#x20AC;? was spot on. In regards to disability it really was an election about nothing.

Media coverage of the election consisted of some photo opportunities of members of parliament (MPs) sitting with disability support workers discussing the NDIS. Publicity about disability was reduced to the odd sentence in the papers, the odd blog picture and the â&#x20AC;&#x153;chirping of cricketsâ&#x20AC;?.

Forget about new announcements; both major parties struggled to even mention existing initiatives relating to disability.

However, I would like to congratulate Rob Pyne â&#x20AC;&#x201C; the new state member for Cairns â&#x20AC;&#x201C; Queenslandâ&#x20AC;&#x2122;s first elected candidate

3 (

with a severe physical disability. Having sustained quadriplegia after an accident in 1991, Rob gives Queensland some genuine disability representation.

Greater disability representation is something Queensland and Australia sorely needs. I may be wrong, but the only other MPs with prominent disabilities I can think of are Kelly Vincent (South Australian government) and the now retired Graham Edwards (Western Australian and Federal governments).

People have mixed feelings about identity politics and MPs from distinctive backgrounds are sometimes reluctant to be pigeonholed as single-issue politicians.

I hope Rob can strike the right balance between that and representing his local constituency.

I am not saying that only someone with the lived experience of a severe disability is automatically the best qualified to be, say, Minister of Disability Services (or whatever the new department is called).

But hey, it certainly doesnâ&#x20AC;&#x2122;t hurtâ&#x20AC;Ś â&#x2013;

www.scia.org.au (

CULTURE CORNER

d

3# . @ I < 4 / D . > "

3> I 7 E K 8 3

) * +

by Joan Langdon Published by Vintage, Australia, 2014, 256 pp.

Summertime in Perth in the early 1950s struck fear in the heart of every parent, as it did in the rest of Australiaâ&#x20AC;&#x2122;s towns and cities.

From the 1930s till the 1960s, virulent polio epidemics swept almost randomly throughout our communities, usually in the warmer months and mostly children were the targets. Until the advent of the Salk and Sabin vaccines in the mid-1950s which virtually wiped out polio in Australia, the disease caused widespread panic, and irrational bigotry against and the social isolation of survivors and their families.

Contagionâ&#x20AC;&#x2122;s grip Polio (poliomyelitis) also known as infantile paralysis, is a highly infectious viral disease, spread from person to person through the mouth and thereafter multiplying in the intestines.

All of the children form strong, loving bonds; however, the growing secret passion between Frank and Elsa and the aftermath of its shocking discovery is the pivot on which the narrative turns. In the book, sexual love between such young people with disabilities is as tacitly forbidden as it is unthinkable. Even disgusting.

G# R @ 3# 4 3

3# 3 3# @ 3# # ^ 4 . . 3 3 / 3#

The skill of the writer lies in conveying the truth of the childrenâ&#x20AC;&#x2122;s wisdom and maturity beyond their years, wrung from the grief, loss and devastation of sudden and disfiguring disability.

According to Polio Australia, between the 1930s and 1960s there were 40,000 cases of paralytic poliomyelitis recorded in Australia, but the total number of polio infection cases may have be up to 100 times greater. This is because only one in 100 cases of poliomyelitis caused paralysis thereby requiring hospitalisation and mandatory reporting.

) [ !

Life in the old pub The Golden Age is an old pub converted into a childrenâ&#x20AC;&#x2122;s convalescent and rehabilitation centre where fourteen paralysed children have accord magazine

Here we meet 13-year-old Frank Gold, the only son of Jewish Hungarian ĂŠmigrĂŠs swept away from their cultural and familial roots by a vicious war to the other side of the world. Frank is intelligent, perceptive, a budding poet and mad for Elsa, a fellow resident. Elsa is 12, a beautiful, gentle and serene observer of this insular and highly regulated world under the benign and watchful care of head nurse, Olive Penny.

The virus can then invade the brain and spinal cord. It usually paralysed the legs but could also paralyse the respiratory nerves and upper limbs and in some cases result in death.

It is against this background of post-war Perth in the grip of the polio contagion of 195354 and the imminent first visit to Western Australia by the young Queen Elizabeth and her husband that Joan Londonâ&#x20AC;&#x2122;s novel The Golden Age is set.

!

been sent after hospital to learn to walk and live independently again.

Interwoven with the central story are the lives of the childrenâ&#x20AC;&#x2122;s families and their varying reactions to how polio has forever begun to reshape their destinies for better or worse. This is handled with great delicacy and insight. As these families from disparate social backgrounds come together around the rituals of visiting and fund raising for the centre, tentative friendships are struck in mutual need.

From these events the novel offers a poetic reflection on more universal themes of nostalgia for a lost past, exile, belonging, bereavement and ultimately self-acceptance.

Frank and Elsaâ&#x20AC;&#x2122;s fate could be anyoneâ&#x20AC;&#x2122;s such is the cruel randomness of a polio epidemic or a car accident. â&#x2013;

www.scia.org.au '

Following the huge success of the SCIA Independence Expo at Australian Technology Park in 2014, weâ&#x20AC;&#x2122;ll be returning over two days on Friday 15th and Saturday 16th April 2016.

Donâ&#x20AC;&#x2122;t miss your opportunity to be seen at Australiaâ&#x20AC;&#x2122;ss

physical disabilities. Register your organisations interest in be a part of this exciting event!

EXH IBIT OR

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