Hearing HQ Magazine Apr-Jul 2016 by Hearing HQ Magazine

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NEWS ALERT

Apr - Jul 16

NAVIGATING THE

NDIS SPORTING CHANCE The 2016 Olympics & beyond

What's next for Australian Hearing

Cochlear Implant Diary Was surgery a success?

ASK THE EXPERTS • Sudden hearing loss explained • Getting used to hearing aids • Do I need an audiologist?

MEET THE SUPERHEROES

ON A HEARING MISSION

E V I S U L C X E

AFL’s Jason Akermanis: A life changed by hearing loss

As seen on Channel 9

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editorial advisory board Emeritus Prof William Gibson AM

Prof Gibson held the Chair of Otolaryngology at The University of Sydney until August 2013 and was head of ENT at The Royal Prince Alfred Hospital. He is the founder and director of the Sydney Cochlear Implant Centres, and still sees patients privately. He is also currently undertaking research into Meniere’s Disease.

Assoc Prof Robert Cowan, CEO HEARing Cooperative Research Centre

Principal Research Fellow of Melbourne University, A/Prof Cowan has researched and published extensively in the fields of audiology, cochlear implants, sensory devices and biomedical management. He holds the '06 Denis Byrne Memorial Orator Award.

Sharan Westcott Clinical Manager, SCIC

Former principal audiologist for Australian Hearing, Sharan Westcott has provided audiology services to children and adults for more than 40 years and now coordinates a team of surgeons, audiologists, speech pathologists and social workers at SCIC.

Adjunct Prof Harvey Dillon Director of Research, NAL

Dr Dillon has researched many aspects of hearing aids, effectiveness of rehabilitation, auditory processing disorders and methods for preventing hearing loss. He has designed hearing aids, authored over 160 articles and his text on hearing aids is used worldwide.

Alex Varley, Chief Executive Media Access Australia

MAA focuses on identifying practical, realworld solutions for people with disabilities to access audiovisual content to empower people to be independent. They provide advice to government, industry, educators and individuals.

Dr Neville Lockhart

After 45 years of profound deafness Dr Lockhart received a cochlear implant in 2005. His involvement in the cochlear implant support group CICADA and his technology background (retired senior CSIRO scientist) led him to become editor of CICADA Magazine (now Hearing HQ).

Olivia Andersen, Founder/Director Hear for You

Profoundly deaf from birth, Olivia Andersen started Hear For You, a not-for-profit organisation to help young deaf people achieve their life dreams. The birth of her first child prompted her decision to have a cochlear implant. The Editorial Advisory Board provides guidance and expertise on a voluntary basis. They may not review every article and make no warranty as to the scientific accuracy of the magazine. They are not responsible for any errors published and do not endorse advertised products. If you have questions about product suitability for your specific needs, we recommend you consult an audiologist or doctor. Any person with health issues or medical concerns should first take advice from a health professional.

Published by The Tangello Group Pty Ltd EDITOR Rebecca Barker, editor@hearingHQ.com.au EXPERTS Assoc. Prof. Melville da Cruz, Emma Scanlan, Roberta Marino, Jawan Sayed CONTRIBUTORS Liz Efinger, Paul Higginbotham, Mark Wyburn ADVERTISING SALES MANAGER Sally Davis, sally@tangello.com.au 0438 177 036 PUBLISHER Lucinda Mitchell, lucinda@tangello.com.au Printed by Offset Alpine

contents contents FEATURES

HEARING SUPERHEROES

THE NDIS & AUSTRALIAN HEARING

SPORTING CHANCE

EXCLUSIVE: TRANSFORMING LIVES THROUGH SPORT

COCHLEAR IMPLANT DIARY

Meet the 'superheroes' on a mission to help disadvantaged people hear.

What's changing and how it affects you.

Get inspired this Olympic year as Australian athletes push aside auditory issues and go for gold.

AFL’s Jason Akermanis reveals how sport and family hearing challenges changed his life.

In the final instalment of her diary, Liz Efinger reveals whether implant surgery was a success.

Cover image courtesy of Warner Bros.

REGULARS

NEWSBITES

ASK THE EXPERTS

Research, innovations and news items.

Professional advice on readers' questions and concerns.

ALL ABOUT

PRODUCTS & SERVICES

HERE TO HELP

REAL PEOPLE

The Earbus Foundation of WA.

Information at your fingertips. Organisations providing advice and support.

A couple whose son has hearing loss navigate the NDIS.

SUBSCRIBE TO HEARING HQ Personal orders: $25/year for 3 issues posted to your home Multiple copies - Small Bulk: $35/year for 3 issues (5 copies of each issue) - Large Bulk: $55/year for 3 issues (45 copies of each issue) For all orders you can subscribe - online at www.hearingHQ.com.au - post the form on page 26 to Hearing HQ, PO Box 1054, Lane Cove NSW 1595

HQ hearing

Hearing HQ Magazine is published by The Tangello Group Pty Limited 'The Tangello Group' (ABN 38 155 438 574) PO Box 1054, Lane Cove NSW 1595 and subject to copyright in its entirety. The contents may not be reproduced in any form, either in whole or part, without written permission from the publisher. All rights reserved in material accepted for publication unless specified otherwise. All letters and other material forwarded to the magazine will be assumed intended for publication unless clearly labelled “not for publication”. Opinions expressed in Hearing HQ Magazine are those of the contributors and not necessarily those of The Tangello Group. No responsibility is accepted for unsolicited material. No liability is accepted by the publisher, the authors or members of the editorial advisory board for any information contained herein. All endeavours are made to ensure the accuracy and veracity of all content and advice herein but neither Hearing HQ Magazine, its publisher, contributors or editorial advisory board members is responsible for damage or harm, of whatever description, resulting from persons undertaking any advice or purchasing any products mentioned or advertised in Hearing HQ Magazine or its website.

Hearing HQ Apr - Jul 16

ed's letter

Big changes are happening to Australia’s disability and hearing services. But how will they affect you? This issue, we look at the impact of the National Disability Insurance Scheme (NDIS) and clarify the implications of a possible sale or transfer of Australian Hearing, the Government’s hearing services provider. As anyone with auditory difficulties knows, change can be challenging but with the right support and information, you can move forward positively. One couple, who live in an NDIS trial site, did just that as they navigated the new system with their son (see Real People Real Stories on page 22). They hope their story will help others looking to access and understand the scheme. With suitable equipment and support, anything is possible - as the incredible athletes in our Sports special reveal in the lead-up to the 2016 Olympics and Paralympics. Plus our cover story celebrates more homegrown 'heroes' and their celebrity supporters who are transforming lives through hearing missions in less fortunate countries. As the saying goes, nothing great ever came from sitting in your comfort zone. Finally, our Publisher Lucinda Mitchell and I would like to say a big thank you and farewell to Alex Varley who has been an important member of our Editorial Advisory Board since Hearing HQ began in 2012. After 20 years at the Australian Caption Centre and its renamed successor Media Access Australia, Alex is pushing past his comfort zone to explore new horizons. We wish you all the best Alex. Rebecca Barker Editor To have your say contact: editor@hearingHQ.com.au

newsb newsbit THE FUTURE OF

The Royal Institute For Deaf and Blind Children (RIDBC) is leading a proposal to take over the Government's hearing services provider, Australian Hearing (AH). The RIDBC joins Cochlear Limited and Sydney's Macquarie University, a leading centre for hearing research, in a consortium being considered by ministers to take ownership of the organisation and its Sydney-based research arm the National Acoustic Laboratories. It is expected that AH will have increasing competition from private hearing service providers as part of the introduction of the National Disability Insurance Scheme, shrinking its monopoly on many services. In a statement to the Sydney Morning Herald, Chris Rehn, RIDBC’s CEO said ideas include extending Australian Hearing’s services to include cochlear implants for the severely deaf, therapy, education and rehabilitation. He said the consortium wants to avoid AH being sold to a private equity firm or hearing aid manufacturer. “We want to see patient’s needs met in a way that’s not about profit orientation, it’s about better serving the needs of Australians with hearing loss,” says Rehn. Support groups Parents of Deaf Children, the Deafness Forum of Australia and Aussie Deaf Kids want clarification on the implications of a new provider as many are happy with Australian Hearing’s services. “Right now, we need answers to many questions about the consortium proposal and how it will impact on the range of options that are currently available,” says Anna Messariti, president of Parents of Deaf Children NSW.

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Aid to accessorise While spectacles have become a sought-after fashion accessory, hearing aids have not gained the same cachet– until now. Japanese designer Tatsuya Honda has created a fashionable device after watching the struggles of deaf children at his school in America. As a student, he went on to develop a stylish, illuminating hair clip/or earring, called the Ontenna, that conveys sound to the wearer as vibrations. “It allows the wearer to feel sound through their hair kind of like how cats can sense movement in the air with their whiskers,” explained Honda to American technology website Venturebeat. Using circuit board technology, sounds in the 30dB to 90dB range can be translated into 256 different levels of vibration and light on the clip. In this way, rhythm, pattern, loudness and other sound qualities can be conveyed to the user. After being trialled, Honda hopes athletes at the Deaflympics will roadtest the device. Feedback so far has been positive with users saying they were able to distinguish between the sound of the intercom and telephone and realise when the vacuum cleaner had become unplugged. “Track and field players could use Ontenna when working on the timing and rhythm of their strides to possibly improve their record,” says Honda.

for ear ringing Jeweller to the stars Jan Logan is brightening up the lives of people with tinnitus by helping raise funds for a telephone support line. The matriarch of a Sydney jewellery business which has adorned Hollywood stars such as Jennifer Lopez says her own struggles with tinnitus – the ear-ringing condition that affects one in 10 Australians – prompted her to collaborate with Better Hearing to raise funds for a phone line to comfort, advise and educate people who are affected by ear noises. Fifteen per cent of sales from Logan’s Arcadia earring range will go towards the campaign and supporters can make a donation at the website www.myearringsforpeace.org.au. Victoria Didenko, a board member with Better Hearing Victoria, brought about the collaboration after enduring three years with tinnitus. “I was galled to be told by the medical profession that there was nothing that could be done to stop the ringing so I decided to launch a campaign to help myself and the two million Australians who also struggle with this auditory torment,” says Didenko.

For most people, hearing loss has a profound effect on quality of life. This can be further intensified if the person has a passion for music or works in this industry. Many hearing aids are adjusted to maximise the clarity of speech but in recent years auditory devices have become increasingly sophisticated offering specific programs that make listening to music clearer and more enjoyable. Musical acoustics differ from speech as there is such a large variation of sound frequencies. Hearing aid users often get confused by instrument sounds, wrongly identifying them as feedback or irritating interference. Researchers at National Acoustic Laboratories at Macquarie University’s Australian Hearing Hub are working with the HEARing Cooperative Research Centre to fine-tune these in-built music programs in a new study. Experiments will aim to determine how the acoustics of music vary in ways that might affect hearing capabilities, what amplification characteristics are preferred for different styles of music and whether existing signal processing features disrupt the listening experience.

Hearing HQ Apr - Jul 16

newsbites newsbites Track your hearing

A 12-year-old Sydney schoolgirl is behind the invention of a tracking system that locates lost cochlear sound processors. Bella Ryan (far left), from Roseville College wanted to help her sister Lucy (left) who regularly misplaces sound processors from her two cochlear implants. Current implant models come with a remote control that adjusts volume and sensitivity but it cannot pinpoint the exact location of a lost device unless it is close by. “You can only walk around until your lost cochlear comes inside a three metre radius and then the remote will beep and flash,” says Ryan, who is hoping to use satellite technology to create a new tracking system. “My project is all about giving a pinpoint idea of where the lost cochlear is and I hope to achieve this through a Bluetooth connection between a smartphone app and the tracking device which would be attached to the cochlear,” says Ryan. Her invention clinched second place in the SAP Young ICT Explorers NSW school competition. The bright student was invited to Cochlear’s headquarters at Macquarie University to meet engineers and discuss her ideas. “It has really inspired her to keep going and develop the concept further,” says Ryan’s mum Natalie.

The Australian Deaf Games will be held in Albury-Wodonga in

two years’ time (January 20-27, 2018), shortening the usual four-year gap between events to maximise opportunities for athletes to compete overseas. “It is a really exciting time for deaf sports… the change of timing ensures the games are part of the selection process for international competitions, in order to ensure the best possible preparation for our athletes,” explains Garry West-Bail, general manager at Deaf Sports Australia. There have never been more opportunities for the country’s hearing challenged athletes to hit their goals with New South Wales’ Melinda Vernon, 30, aiming to be the first deaf triathlete to compete at the Olympics later this year in Rio, Brazil. The incredible achievements of other deaf athletes were recently recognised at the Adelaide Games, including Samuel Greatorex, 16, of Glen Waverley, Victoria, who clinched Deaf Sports Australia’s male athlete of the year award after achieving four Australian open records and eight Australian age records in swimming events. Jamie Howell, 17, of Redlands Bay, Queensland (right), scooped the female equivalent, winning gold, silver and bronze medals in athletics events at last year’s Asia Pacific Deaf Games. 6

Hearing HQ Apr - Jul 16

DAMAGE CONTROL After launching its pilot study HEARsmart in 2014, the HEARing Cooperative Research Centre (HEARing CRC) launched a Know Your Noise website that provides an interactive calculator to estimate sound exposure. The user selects an activity and the length of time doing it and a risk rating appears alongside a peer group norm. With funding from the Deafness Foundation (Victoria), researchers are now working with two Melbourne music venues to see if they can keep sound levels within safe limits without impacting patrons’ enjoyment. If outcomes are positive, the team will work with Music Victoria to promote findings and educate other venue owners about healthy sound levels and the impact on staff and customers. See www.knowyournoise.nal.gov.au. Also, check out HEARing CRC’s new website www.hearnet.org.au.

CHALLENGE A range of dolls are now on offer that celebrate real beauty instead of Barbie-like perfection. But while these toys (see the US Lammily doll pictured) show normal flaws like acne, bruises and birthmarks, there are few playthings that depict disabilities. British journalist Rebecca Atkinson, who wears hearing aids, aims to change this after smashing a crowd-funding campaign called ‘Toy Like Me’ to create a new website that will push for more toys that mirror youngsters with disabilities. Atkinson’s team has already transformed everyday toys, with hearing aids, guide dogs, walking sticks and wheelchairs to show large toy manufacturers what can be done to make the industry more inclusive. “I’d grown up wearing hearing aids and never seen myself represented anywhere. There were no deaf people on TV, in the comics I read or the toys I played with, explains Atkinson, who launched a Facebook and Twitter campaign. “The toy industry shuts out children with disabilities, we want to change that,” she says. Toy Like Me has already gained the support of toy giant Playmobil as well as Julia Donaldson, author of the bestselling children’s book, The Gruffalo. For instructions to make cochlear implants for dolls visit: www. lammily.com/how-to-make-cochlear-implants-for-your-lammily-doll/

s treatmen UPDATE: Tinnitu

ating tackle the debilit any attempts to m d en an be g in ve zz ha bu e Ther ooshing, s – the hissing, wh rly tu la ni cu tin rti n, pa io ry, ct fli af make life a mise n ca at th s ise e or/clicking no 85 per cent of th ss. Around 70 to r from ffe su to t after hearing lo gh tion are thou la pu po r d ire pa ng s occurri afte hearing-im per cent of case 90 nd g in ou rk ar wo th e wi tinnitus searchers ar ditory system. Re au e til th Un to . e m ag dam the proble ent that will cure s on a drug treatm relief with tinnitu in ga ay , sufferers m in ed d ov an pr ts ap an is ss is re th apy, antidep er th g in in r, tra re ve we counselling, hearing aids. Ho ograms in their ry in to ra bo La built masking pr er ap les Stark Dr ar Ch e and th at s um er research e of microp ps hope in the shap w ne e, r fe ac of sp r ica Amer e tiny inner ea liver drugs to th ns. gels that will de ssible to surgeo ce ac has been in w, no hearing til g un in at ich tre wh ication when ed m ed ct re di ecise “We’ve tried day is very impr e way we do it to ford an St a r, le disorders but th ck Ja says Robert ” d, te ra lib st. ca gi lo ly -neuroto and poor edicine otologist M of ol sorder ho di Sc e ity nc Univers m a bala rson suffering fro pe a r ntrol fo co is e ot ea m id re “The a wireless rry ca to e, pl am therapeutic or tinnitus, for ex tton to release a bu a p ta y pl sim rientation with them and s – whether diso om pt m sy e th er able,” Jeffrey drug whenev become unbear – rs ea e told th in or ringing neer at Draper, biomedical engi or ni se a , in te Borens n magazine. Scientific America

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Australia has some of the best hearing services in the world â&#x20AC;&#x201C; but what is being done to make auditory care accessible across the globe?

HEARING SUPERHEROES With debate raging over the privatisation of Medicare payments and the rollout of the National Disability Insurance Scheme, it is easy to forget that we are lucky to live in a country with world-leading healthcare. Free and subsidised hearing services are accessible to the most needy. But with World Health Organisation statistics showing 360 million people suffer from disabling hearing loss, more needs to be done to make hearing aids, care and training available to all, wherever they may live. A number of celebrities are putting their weight behind the battle to 8

Hearing HQ Apr - Jul 16

heal the world of its hearing woes. Away from his day job as the dark knight in the recent movie, Batman v Superman: Dawn of Justice, actor Ben Affleck founded the African project Eastern Congo Initiative, for which Starkey Hearing Foundation recently distributed free hearing aids. Hollywood stars Johnny Depp and his wife Amber Heard also joined the foundation in Rio, Brazil, last year to hand out free, customised hearing aids to 200 recipients. As a member of former US President Bill Clinton's global initiative, the foundation has pledged to fit more than one million hearing aids

to people in need this decade alongside battery makers Rayovac. Meanwhile Swiss Sonova-led Hear The World Foundation has 60 projects on all five continents. It is supported by more than 80 celebrity ambassadors including Spiderman actor Tobey Maguire and musicians Bryan Adams and Annie Lennox. Closer to home, ordinary people are making an extraordinary difference in Papua New Guinea, Samoa and Fiji. Sydneysider Bronwyn Carabez has devoted her life to helping Fijians with hearing loss after her daughter Virginia was diagnosed deaf aged two.

Main picture of Ben Affleck courtesy of Warner Bros, Tobey Maguire (centre pic) by Bryan Adams

Through the Carabez Alliance, she has helped raise more than $5 million for the cause. This has led to audiology, hearing services, teacher training, speech and language programs being offered in a country that did not have anything for people with auditory problems. "It was unheard of that a deaf and hearingimpaired child go to mainstream education, let alone university," says Carabez, who also initiated audiology services in Samoa. "We have seen six children in our program go to university and 20 of our children mainstreamed by giving them intensive rehabilitation over the past 12 years," says Carabez. During this time, the alliance has been supported by hearing device makers Phonak, Unitron and Cochlear as well as ABC Tissue millionaire Henry Ngai, who donated 1700 hearing aids. On the Fiji projects, Emeritus Professor William Gibson, founder of the Sydney Cochlear Implant Centres, trained surgeons in bone anchored hearing implants and distributed sustainable hearing aids with rechargeable batteries. Melbourne-based, not-for-profit organisation Ears Inc also provides training and support to local workers in clinics, hospitals, deaf schools and mission groups in developing countries. In Fiji, Ears Inc audiologist Donna Carkeet launched the first newborn screening for auditory brainstem response as well as distributing free second-hand hearing aids and helping to train one of the country’s few audiometrists, Sevanaia Ratumaitavuki (or Tukana as he is known). The work is exhausting and never-ending - but hugely rewarding. “I find it hard to believe Tukana works in three towns in Fiji. To work in Suva he is away from his family overnight once a week and travels five to six hours each way,” says Carkeet. David Pither, President of Ears Inc says hearing aid manufacturers lag far behind demand. “The industry made 12 to 13 million hearing aids last year and 40 per cent of those went to people who already had devices. With 360 million suffering from disabling hearing loss, we simply aren’t keeping up,” says Pither, whose team tests, fits and supports people with hearing loss around the world. One Ears Inc project in Malawi helped fund two local students to train as audiologists at a university in England. They will be

Above: Watched by friend and musician Alice Cooper, actor Johnny Depp fits a hearing aid to a young girl in Rio, Brazil. Left: Tobey Maguire supports Hear The World Foundation and (below left) as Spiderman. Below: Ben Affleck discusses the work of his charity the Eastern Congo Initiative.

the first indigenous people to practice professionally. While great efforts are being made to improve audiology in developing countries, any new hearing services need to be affordable, accessible and sustainable to succeed, says Gitte Keidser, senior research scientist at the National Acoustic Laboratories (NAL). While manufacturing cheap, effective hearing aids is possible, many projects come unstuck when it comes to funding and providing ongoing care and rehabilitation or when clients need repairs or new batteries. “When handing out free hearing aids, the key is to have a robust device that’s not too sophisticated. You can produce quite good devices that don’t cost more than $100. The problem is setting up a sustainable model,” says Keidser. As a charity, Ears Inc is able to Hearing HQ Apr - Jul 16

Audiometrist Tukana attends to a client in Fiji.

bulk-buy hearing aids from an American company at $50- $60 each. Nowadays, many of the parts for hearing aids are cheaply made in Asia. The recent rise of self-fitting hearing aids which can be tuned without an audiologist, sound like an affordable, quick fix, but may be dangerous or unsuitable for some. Apart from potentially missing health issues - such as tumours - which may need urgent medical attention, these products rely on the user being able to follow instructions

Made for

and use technology. A study by NAL researchers in the HEARing CRC shows a technological barrier remains for older users, although it is steadily improving. In a study of 40 people who self-fitted hearing aids, 55 per cent were able to get through the process satisfactorily but the rest needed assistance. NAL researchers hope to come up with a questionnaire which will help clients work out if they will be capable of fitting and customising their own hearing aids. “If you have old age

deafness, some self-fitting devices could work really well but if you have damage from disease, viruses, noise pollution or a medical condition, it could be useless or even dangerous to self-fit hearing aids. We strongly recommend that people have a proper assessment before having hearing aids fitted,” says Pither. One Canadian organisation blazing a trail in the developing world is World Wide Hearing (WWH) which has projects in Vietnam and Guatemala. "We are working with a manufacturer to create a portable headset that creates a perfect ear mould in four minutes, rather than the average two weeks, using rapid-setting silicone,” says a WWH spokesperson. With such advancements becoming available to people in poorer countries, there are likely to be more success stories like those recently witnessed by Ears Inc volunteers. “One person we fitted with hearing aids in the Dominican Republic has gone on to study medicine. So I look forward to the day when we see a President or Prime Minister emerge after being fitted with our hearing devices,” says Pither.

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the

NDIS & Australian

Hearing Hearing HQ’s editor Rebecca Barker clarifies the implications of important changes to national hearing services.

Significant changes are happening in the hearing health industry which will affect thousands of Australians with auditory difficulties. This is due to the start of the National Disability Insurance Scheme (NDIS) and the possible ownership transfer of the Government’s hearing services provider Australian Hearing (see p13 Hearing services – what’s changing). The mechanics of how the NDIS will provide hearing aids and auditory care are still being confirmed and this has caused much debate and uncertainty about the future of these services for hearing-challenged adults, babies and children. In 2013, the Government decided that eligible hearing services program clients would transfer to the NDIS, together with funding for those clients. The Australian newspaper has reported the scheme is expected to cost $22 billion by 2019-2020 with just more than $11bn from the Federal Government and the rest from states and territories.

what you need to know

THE FACTS: • Trials of the NDIS started in pockets of Australia in 2013 but national rollout begins on 1 July, 2016. Eligible people can sign up as the NDIS is rolled out in their area. (see www.ndis.gov.au for your area). • Clients of the Government’s hearing services program who are eligible for the NDIS will transition to the scheme by 2019-20. • Community Service Obligation program (CSO) clients of Australian Hearing will continue to receive the same services under NDIS until mid-2019. Then they may opt to choose another provider, approved by the National Disability Insurance Agency (NDIA), to deliver similar services. • Registering with NDIS will not change your level of access to hearing services during this interim period and might provide a more flexible range of services. • For the first time, Australians between 26 and 64 with permanent hearing loss and functional impairment may become eligible for funded assistance.

The Government is considering a proposal to transfer Australian Hearing to a consortium led by the Royal Institute for Deaf and Blind Children (RIDBC) together with implant maker Cochlear Limited and Macquarie University. At the time of writing, the proposal had been submitted and was under consideration. It is unclear how long it will take or whether it will be a ‘sale’ or ‘transfer’. Regarding timing, RIDBC told Deafness Forum of Australia, “We are aware some stakeholder groups are concerned that Government intends to make further announcement regarding Australian Hearing as part of the May Federal Budget, however we are not aware of any intention from Government to rush through a formal due diligence and assessment process.” Concerns have been expressed about the consortium on issues such as conflicts of interest, financial management and standards under a new combined NDIS and ‘Australian Hearing’ program. Also, how will people with hearing disorders such as tinnitus or those in remote areas be supported and serviced? One point the RIDBC consortium has confirmed is that device repairs including loan equipment Hearing HQ Apr - Jul 16

For information on the NDIS transition plan visit www. hearingservices.gov.au or phone the NDIS on 1800 800 110.

will continue to be available. Under the NDIS, there will be a choice of service provider for CSO clients from mid-2019 - Australian Hearing (or its replacement) or other private clinics. In Australia, all children with hearing impairment receive services through Australian Hearing, while seniors, veterans and other eligible adults have a choice of service provider from Australian Hearing or from private providers under the Hearing Services program of the Commonwealth’s Office of Hearing Services (OHS). While the OHS program provides a regulatory framework for eligible clients, there is currently no Government regulation of the audiology sector. However, Audiology Australia, the peak body representing the majority of audiologists, ensures its members are bound by a code of conduct and a code of ethics. The absence of Government regulation potentially leaves holes for unsafe, unethical and poor practice. Steve Williamson, of the Deafness Forum of

Hearing HQ Apr - Jul 16

Australia, is supportive of the idea of client choice but is concerned about an 'untested' private market delivering services to children, when they have been solely delivered by Australian Hearing. The Forum recently interviewed the consortium bidding for Australian Hearing in its newsletter One in Six. See www. deafnessforum.org.au for detailed questions answered by the consortium. An RIDBC spokesperson says consortium members agree it is important that the new entity has a non-profit orientation “…and that any profits be reinvested in the entity in order to provide continuous improvement and access to hearing services for all Australians.”

At time of publication this was the most up-to-date map on www.everyaustraliancounts.com.au/about-ndis/rollout/

Main image: iStock

HEARING SERVICES – what’s changing?

The Australian Government’s hearing services program, administered by the Office of Hearing Services (OHS), is long-standing and highly regarded around the world. From 2014 to 2015, 669,793 people accessed the program and 363,598 OHS hearing aids were fitted. Services for eligible adults with an age, disability or veteran’s pension are provided by Australian Hearing and accredited private audiology clinics through a voucher system. Its subsidised audiology services to children and adults under 26 years old are provided via the CSO program by Australian Hearing (AH). More than 3.55 million Australians are believed to have hearing loss and nearly half of them are aged between 16 and 64. Most of those older than 26 and younger than 65 are ineligible for Commonwealth assistance, meaning more than 1.5 million people with hearing difficulties who could be working receive no public funding for services and technologies that would help them communicate to their best ability. This is expected to change and more people in this age bracket should become eligible for hearing aid funding as the program is transferred to the National Disability Insurance Scheme (NDIS). “As the threshold for participation in the NDIS is much broader than the eligibility requirements to access services through the hearing services program… it is

reasonable to expect that more people aged in this demographic, in particular those with binaural hearing loss, will be able to access funded hearing services through the NDIS,” says Sharyn McGregor, director of policy and planning at the Office of Hearing Services. Many questions remain though over how the scheme will work in relation to hearing services and care. Confusing the issue is the Government’s decision on whether to transfer ownership of its hearing services provider Australian Hearing. But overall, the NDIS is expected to open up an element of choice of provider for more people. McGregor explains: “Voucher clients receiving services from Australian Hearing can already choose to relocate to another contracted provider, whereas CSO clients can only receive services from Australian Hearing. One of the main changes, which will be brought about by the rollout of the NDIS in mid-2019, is that CSO clients under 26 years who transfer to the NDIS will generally be expected to be able to choose to stay with Australian Hearing or choose another provider.” Concerns from hearing support groups include how standards will be upheld and maintained and what will happen to people in remote areas. “The group most affected by this change is hearing impaired deaf children and

their families… What is concerning is the private market is untested in the delivery of services to children with hearing loss. "The introduction of contestability introduces significant risks in terms of access, expertise, quality, standards and client outcomes,” explains Steve Williamson, chief executive of the Deafness Forum of Australia. “If services are spread across multiple providers it will be difficult for the clinicians to maintain their skill level which puts the client outcomes at risk,” he says. Concerns from hearing support groups also include whether the safety net of the Government hearing services provider will continue to be made available. As the Government continues to work through the finer details of the scheme, more will become clear.

Hearing HQ Apr - Jul 16

SPORTING CHANCE Hurdling the challenge of hearing loss, these inspirational athletes are giving Olympians a run for their money, writes Rebecca Barker.

Hearing HQ Apr - Jul 16

Melinda Vernon images courtesy of Delly Carr/Sportshoot

Deaf triathlete Melinda Vernon competes at elite level.

With 10,500 athletes set to take part in the Olympic Games in Rio in August and another 4,350 expected to compete in the Paralympics a month later, it looks set to be a year of outstanding sporting achievements. But how many athletes bound for Brazil will have hearing difficulties? The answer is, very few. In the 2012 London Paralympics, one of the rare exceptions was equestrian Laurentia Tan who scooped silver and bronze medals. British athlete Olivia Breen, who has cerebral palsy and wears hearing aids competed in the London Paralympics 100m T38. However, she failed to hear a false start being called in the first round, sprinted to the finish and the race was postponed for an hour so she could recover and run again. With more support and awareness for these situations, sports opportunities would be greatly improved for hearing-challenged athletes. Most elite competitors with auditory issues compete in the World Deaf Games and Deaflympics, as another disability is required for them to participate in the Paralympics. Decathlete Dean BartonSmith, who is one of only two deaf Australians to have competed at the mainstream Olympics in Barcelona in 1992, (the other was fencer Frank Bartolillo in Athens in 2004), says more needs to be done to educate people about

the competitive potential of deaf athletes. “There is still a stigma in regards to whether a person who is deaf or hard of hearing can participate let alone have the ability to learn skills,” says BartonSmith. “Having a greater awareness and understanding about hearing loss can go a long way to look at the person on what they can do, not what they can’t,” he explains. But the tide is turning and a new generation of deaf competitors is pushing for Olympic recognition. Australia’s Melinda Vernon, 30, is aiming to become the first deaf triathlete to make the Olympic Games. Not only has she dealt with hearing difficulties to compete but the road to Rio has been fraught with frustrations. “In November last year, I was involved in a freak bike accident in which I dislocated and broke three fingers and sustained a slight spinal fracture and nerve injury,” explains Vernon, who is ranked 142nd in the world and is more intent than ever on achieving her goal having enlisted new coaches. “I’m really excited about the future. There are ways to overcome certain barriers – you just have to be proactive to putting strategies in place in order to achieve whatever goals you have in mind,” she says. Following rules for elite deaf sports events, Vernon usually competes without hearing equipment. But technology is giving her an edge at Olympic level, where there is no restriction on the use of hearing devices. “I have been brought up competing in sport all my life, so from a young age, I learnt how to compete to

Delly Carr/Sportshoot

my very best without my hearing aids/ cochlear implant. Now it is like second nature for me and I have strategies in place…such as being more visually alert at the start of a race to watch for reactions/movements to dive into the water without missing a few seconds,” says Vernon, who wears a cochlear implant and an accessory to keep it dry. Events like the Australian Deaf Games and Deaflympics use sign language and adapted technology, like a light being used instead of a starting gun or a referee’s whistle being replaced by a flag as well as other visual cues to support competitors. Athletes at the deaf games in Adelaide in January proved there are no limits to the talents of hearing impaired sportsmen and women. At the age of 16, Deaf Sports Australia’s athlete of the year Samuel Greatorex, from Glen Waverley, Victoria, holds four national open records and eight age records in swimming disciplines, while DSA athlete of the year Jamie Howell, 17, of Redland Bay, Queensland, won gold in the long jump at the 2015 Asia Pacific Games plus silver and bronze medals in the 100m and 200m events respectively. Meanwhile, Canberra-based Katie Kelly (right), who has Usher Syndrome, a genetic hearing and visual disorder, is bound for the Rio Paralympics. She won an outstanding achievement award for triathlon including gold in the Australian National Para-Triathlon competition. Garry West-Bail, general manager of Deaf Sports Australia (DSA), says there is no better time to excel in deaf sport, particularly with the date change of the next Australian Deaf Games, which will be held in Albury-Wodonga in 2018. Normally held every four years, the games moved to every two years to provide a pathway for athletes through to international competition, such as the four-yearly Asia Pacific Deaf Games in 2019. “Previously, our games were out of step with international competitions on the elite athletes’ competition calendar, such as the Deaflympics,” explains West-Bail. “By making this one-off shift for 2018, it allows organisers to use the Australian Deaf Games as part of the selection process for international competitions and ensure the best possible preparation for our athletes,” he says.

Deaf triathlete Katie Kelly with her guide competing at the World Triathlon Series grand final in Chicago, America, last year.

Hearing HQ Apr - Jul 16

Malachi playing with South Melbourne District Sports Club’s Auskickers at the Melbourne Cricket Ground during the 2015 season.

raises the skills of the child because they are actually getting coaching rather than just turning up." Noel Henderson, Deaf Children Australia

loss in the other, Malachi wears a hearing aid - in his footy team St Kilda’s colours. With help from an interpreter, Malachi’s skills and confidence have soared. “These kids can feel isolated and they don’t hear what the coach is saying. It was easy to assume Malachi was ok because he was so good. But often kids just watch what others are doing and copy,” says Noel Henderson, Deaf Children Australia’s development and fundraising manager. “Getting an interpreter raises the skills of the child because they are actually getting coaching rather than just turning up and you see a marked jump in their abilities. His mum said, for the first time she saw him put his hand up and ask a question,” says Henderson. Many sports programs across Australia offer opportunities for those with hearing issues to get active and learn new skills while making new friends. Some offer interpreters and coaches who are trained to maximise the talents of people with hearing difficulties. To find out more about a raft of sports including cricket, swimming, rugby, tennis, basketball, netball, volleyball, squash, darts and lawn bowls see www.deafsports.org.au/ sports-committees.

Enjoy sport on the sidelines at these upcoming events: Bowls Australian Open on the Gold Coast, June 20 to 24. See www. australianopen.bowlsaustralia.com.au. Deaf Basketball Victoria’s National Deaf Basketball Club Championships will be held at Altona Basketball Stadium, Victoria, July 2 to 3. For more information and registration see dbbvic@gmail.com.

Knox Audiology is a hearing specialist centre supported and supervised by ENT medical doctors. Opening in 1988, Knox Audiology continues to serve a broadening Melbourne community across four locations.

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Image of Malachi: Michael Wilson, AFL Media

"Getting an interpreter

Other sports such as cricket and golf are also producing some top players with Cricket Australia winning DSA’s organisation of the year award and golf, which is in the Olympics for the first time this year, boasting the likes of Victoria’s Dean Connell and Callum Farman, who won gold at the Adelaide Games. Connell has been fundraising at grassroots level to raise enough cash to compete at the World Deaf Golf Championships in Denmark in July. Funding is an ongoing concern for deaf sport. Around $2.5 million still needs to be raised to reach the $7 million needed to fund the Australian Paralympic team. The Government usually contributes $50,000 towards the Australian Deaflympic team, which needs around $400,000 to reach the four-yearly event, which is next held in Turkey in 2017. Lack of funding and the fact many hearing-impaired youngsters want to stay in their local team can make it difficult for them to fully integrate into a sports club. With this in mind, Deaf Children Australia and South Melbourne District Sport Club have collaborated to deliver an Auslan Auskick program for children aged five to 12 this year. (See www.deafchildrenaustralia.org.au). The AFL program kicks off on Saturdays at Melbourne’s Albert Park, Oval 11, from April 18, between 9am and 10.30am. It came about after DCA stepped in to fund an interpreter for AFL fan, 11-year-old Malachi Kruse, who suffers from hearing loss. He was born with CHARGE syndrome, a condition that affects the heart, airways and growth. Due to being completely deaf in one ear and having moderate to severe hearing

Akermanis

TRANSFORMING LIVES e through sport v i s u l c x E Australian Football League star Jason Akermanis tells how family hearing issues led him into deaf sport.

He played footy for 15 years with the Brisbane Bears, Brisbane Lions and Western Bulldogs and won a Brownlow medal for his efforts. But father-of-two Jason Akermanis gets his kicks elsewhere these days. After moving to coach the North Albury Football Club three years ago, Akermanis, 39, and his wife Megan, a speech pathologist, have been helping youngsters with hearing loss live life to the full so they can reap the social, health and wellbeing rewards from being involved in team sport. His interest in the deaf community sprang from Megan’s parents, who were both born profoundly deaf after their mothers’ contracted the viral illness Rubella or German Measles. “Megan’s dad played cricket, basketball and rugby league at a very high level and a lot of his close friends came from playing sport,” says Akermanis, who learnt sign language to communicate well with his parents-in-law. He and his wife have also taught their children,

Charlotte,11, and Sienna, seven, (above right with their parents) Auslan and would like to see it being taught and used more in schools as well as at sports programs across the country. Megan, who has her own speech pathology practice in Albury and has worked in the industry for 12 years, says: “It would be good to raise awareness at clubs and just learn a few basics of sign language. Other ways of helping kids in sports include reducing the distance between the coach and players, carrying a pen and paper around and gesturing more,” says Megan. Akermanis has seen first-hand how sport can change the lives of budding athletes. A young boy who wears cochlear implants does the scoreboards at his local junior football league. “He loves his footy and has a true sense of belonging and identity in being able to take part,” says Akermanis. One of the footy legend’s young fans went from playing Auskick to cricket after being inspired by Akermanis on the pitch. Jesiah, 15, (above left) the son of pro golfer Brook Salmon, was born

premature with DiGeorge syndrome, which affects hearing and the fine motor skills in the bottom lip and jaw. He played Auskick but because he wears a pacemaker, the physical contact became difficult and he moved to cricket. “He met Jason at training five or six years ago. Football was his first passion and now I would say cricket and school are his life,” says Brook, whose son plays in hearing and non-hearing teams. He wears a BAHA (bone anchored hearing aid) which improved his hearing from eight per cent to 83 per cent but takes it off for batting, where Brook sees a difference. “The BAHA has been amazing. He can listen to television at the normal volume and is involved in conversations both away from and in sport. But when he is batting, sometimes he gets run out and a lot of communication is lost. From hand actions as he is running between wickets, he knows whether to do another run or not,” explains Brook. Overall, the experience has been overwhelmingly positive. “Hopefully, he will never hold back because of fear or lack of support. He would love to represent Victoria and Australia and play the highest level of cricket that he can,” says Brook.

Hearing HQ Apr - Jul 16

y r a i D

COCHLEAR IMPLANT

In the final instalment of her cochlear implant diary, Liz Efinger reflects on whether surgery has paid off?

Before leaving for my much-awaited trip - a bridge holiday to Paris and Copenhagen followed by a cruise via Iceland to New York - I went for another visit to my cochlear therapists for a final mapping and equipment check. I needed to organise what to take away with me. This list includes chargers, a spare battery, and a back-up processor which I was able to hire in case I got into trouble with my own processor. I also had a final mapping session to make a few adjustments to my settings. I had five settings to choose from. These were my base setting, plus a slight variation on this, a third program for use in noisy situations, and two music programs. At this point I was beginning to feel more comfortable about everything. I had progressed, I was getting considerable help from my implant and my hearing was in a better place. I was going to be out of the country on my own for six weeks with no support from my audiologists. My next session was not for another three months, after which the usual routine would be annual checks. I found this daunting. However, I took off with mixed feelings, excited at the prospect of a wonderful holiday. As it turned out, some parts of the tour were wonderful but others were not so good. Highlights were Paris and New York which is such an exciting city. I was able to meet up with some dear old friends there. But the cruise was disappointing - crowded, noisy and frustrating. It was not a wonderful ship and needed refurbishment. The bridge games were enjoyable but sitting around the dinner table at night with my group was no pleasure and chatting was a problem. As 18

Hearing HQ Apr - Jul 16

before, as soon as a conversation became several conversations, I was lost. My hearing on the trip was still a long way from what I was hoping for and there were many frustrations on the journey. The final mapping before my departure had only improved things marginally. This was a great disappointment as I couldn’t help thinking that many people get good results more quickly. My worry was that maybe I was not going to be one of those wonderful miracles. Fortunately, my next appointment was only a week later. I was still getting lots of grumbly/ growling noises over what I was hearing, disturbing my speech comprehension, and at this stage, I couldn’t hear anything that sounded like music. The mappings are so important, and as all cochlear implant recipients are different, adjustments are a bit subjective, relying on the ability of the recipient to describe in a clear way what and how they are hearing. Believe me, this is a really difficult thing to do. But some minor adjustments were made and I went off full of hope that this time it was going to be good. I was determined to work hard at the computer exercises and listen diligently to plenty of television and radio programs.

Liz (second from right) with some of her tour group on the cruise.

By now, I was six weeks from my sixmonth assessment. Those weeks did not bring much change, just more frustration, although my friends all commented that they noticed I was hearing better. This was hard for me to register, as the day-to-day changes were difficult for me to detect. To get to this point, so much intense concentration is required, and I think my brain is probably less flexible than a younger person’s. It continues to struggle to make words and sentences out of the jumbled sounds it hears. The date for my six-monthly check up with my surgeon Associate Professor Catherine Birman came along. It was at this time I suddenly found I was hearing some strange sounds in my implanted ear – like a continuous low, loud booming noise. Professor Birman thought the noises could be tinnitus. However, she considered it was unlikely to affect my hearing, which was a relief. Otherwise all seemed to be as expected, although Professor Birman also commented that she had expected me to be hearing much better. This didn’t make me feel too happy! Two days later, I went for my big sixmonthly audiology assessment, which compared my current situation with my pre-operation readings. The reassuring conclusion was that I was just where they expected me to be. Music at this stage was still not sounding anything like it should - still just growling, gurgling sounds. But with my hearing-aided right ear it was somehow recognisable. I continue to persevere trying to get better bilateral musical recognition. The good news was that the loud noises I had heard had stopped, so it seems I had no tinnitus.

Coming back to my choir activities, I was preparing for three performances of Handel’s Messiah at the Sydney Opera House, which for the first time was being accompanied by Auslan interpreters. I have been doing this event for 20 years, and so have been anxious to see if it’s any easier post-cochlear. We got to the final rehearsal and I suddenly found hearing the conductor’s instructions seemed easier. I also felt I could hear the individual instruments and the different voices around me better. This was sensational - and definitely a big ‘WOW’ moment! I have found that what I hear can be influenced by the environment, the shape, height and size of the room I’m in, and even the floor coverings. Our performances were extremely well received. But for me, it was not so wonderful, as I heard mainly strange noises in the implanted ear rather than the music, which really affected my participation. Christmas came and went. Having a conversation in this noisy setting felt as difficult as it had been before the implant and I found myself sitting like a dummy most of the time.

But, on a positive note, I know that progress is slow - but - there is progress which I believe will continue for some time. I am now nine months post surgery. Some days I notice definite improvement, but this still requires concentrated listening, and other days I’m bothered by the interference of the ‘grumbling’ noises. But I have no regrets. I now have bilateral hearing which is fantastic and I don’t have to constantly ask people to repeat things. I avoid social contact less, participate in choir, hear others and myself. Background noise is still very unpleasant and sometimes intolerable. But I am able to function in my world without feeling ‘out of the conversation’. I am able to participate. As I was told so often - everyone is different and my experiences may be different to anyone else’s. Some people get an immediate response of hearing proper words and others - like me - take much longer. All in all, I hope this little anecdote may help someone contemplating a cochlear implant. All I would say to them is, ‘Go for it! It’s definitely worth the hassles on the way!’

Top: Beautiful Copenhagen, Denmark's capital. Liz setting off on her Europe and New York trip.

Do you struggle to hear even with hearing aids? A cochlear implant could help you restore your hearing. Unlike hearing aids, cochlear implants don’t just make sounds louder. They are a complex device that can replicate the hearing function of the inner ear. It is never too late to explore your options to improve the quality of your hearing – even if you are currently using hearing aids, you may experience a better result with a cochlear implant. Contact SCIC Cochlear Implant Program on 1300 658 981 to find out more today. Public and private clients Our cochlear implant ü ü services typically require Adults & children of all ages ü no out of pocket costs

1300 658 981 scicadmin@scic.org.au www.scic.org.au

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My hearing is deteriorating slightly after a stapedectomy two years ago. I already have a powerful aid in that ear and I had a sudden total hearing loss in it a couple of years ago. Hearing was partially restored with the help of steroids. Will the stapedectomy plus hearing aid see me out? Melville da Cruz: Otosclerosis is a hereditary disease which affects the hearing elements derived from the otic capsule (ear cyst). The otic capsule forms the complex inner ear (cochlear and balance organ) as well the stapes bone (the third of the three middle ear bones). In individuals affected by otosclerosis both the cochlear and the stapes involvement contribute to the overall hearing loss. In cases where the conductive hearing loss is the greater component, due to involvement of the stapes bone, surgery in the form of stapedectomy (or stapedotomy) is a suitable option for treatment. If the sensory-neural or cochlear component is the greater component, then stapedectomy will not be effective in reversing the hearing loss. A hearing aid will be required in this situation. In many cases of otosclerosis the hearing loss is mixed involving both cochlear and middle ear components. Careful testing of the hearing is required to estimate how much hearing can be restored with surgery and how much will require sound amplification with a hearing aid. However, over time the history of hearing loss due to otosclerosis (and other conditions such as aging and noise exposure) is for the hearing levels to slowly decline (over years to decades). Monitoring of the hearing levels in both

ears at regular intervals is recommended to ensure the hearing outcomes are optimised. Decline in hearing following initially successful stapedectomy surgery also needs particularly careful testing to understand why the hearing is dropping. Generally, it is the sensory-neural or cochlear component of the hearing changes that declines with time, and this component cannot be reversed with surgery. An adjustment of the current hearing aid or fitting a more powerful aid will be required. If the decline in hearing is due to a recurrence in the conductive component of the hearing loss then revision stapedectomy surgery may improve the hearing levels, sometimes dramatically. Rarely, the hearing levels decline to a severe degree which responds poorly to even the most powerful hearing aids. In this situation a cochlear implant will be indicated, often improving the hearing to that experienced several decades before. Careful testing of hearing and consideration of the type of hearing loss will allow your ENT surgeon to advise you which pathway is the best for you.

I had a sudden hearing loss in my right ear a few months ago. The other ear still functions well. What could have caused this and what can I do to hear with ‘two ears’ again? Roberta Marino: To help answer this question, I’ve enlisted the help of Doctor Dayse Tavora-Vieira and Professor Gunesh Rajan from the Hearing Implant Research Unit in Perth, who are experts in implantable hearing devices and cochlear implants for unilateral deafness (UD), or deafness on one side.

Send your questions to:

Hearing HQ Experts PO Box 1054, Lane Cove NSW 1595 or experts@hearingHQ.com.au

The incidence of unilateral deafness is estimated to be in the range of 0.8-2.7 per 1,000 and increases substantially in school-aged children ranging from one to 56 per 1,000. It is estimated that 60,000 people acquire UD in the United States per year, and in the United Kingdom, it is estimated that 9,000 people develop profound UD each year. Unilateral deafness can be present from birth or caused from conditions such as mumps, acoustic neuroma (a benign growth on the hearing/auditory nerve), viral infections, head trauma, Meniere’s disease and genetic disorders. Sometimes there is no known reason for the loss of hearing which can occur suddenly. Suffering from sudden unilateral deafness can be traumatic especially when it is accompanied by the onset of severe tinnitus (noises in the head/ears in the absence of external noise). The major disadvantage of unilateral deafness in adults is detecting the direction of incoming sounds, hearing speech in background noise and hearing when speech is presented to the ‘deaf’ ear. Twenty-six per cent of people with UD struggle with conversations in quiet and 73 per cent report some level of handicap. There is no cure at the moment for unilateral deafness when the cochlea or hearing nerve is affected however different hearing technologies can assist. These include the CROS (Contralateral Routing of Signal) hearing aid, bone conduction hearing aids, bone conduction hearing implants and cochlear implants. A trial of a bone conduction aid is normally done prior to consideration of a bone conduction implant for unilateral hearing loss. From this, a person can attain a good idea of the potential benefits of a bone conduction implant. If your hearing nerve is viable, you could consider a cochlear implant for the ‘deaf’ ear. This is difficult to determine without a patient undergoing a full diagnostic evaluation with an audiologist specialising in this area and consultation with an ear, nose and throat specialist. The other factor to consider is, if a patient has not had auditory stimulation to the deaf ear for all of his/her life, this lack of auditory stimulation makes it difficult to ascertain the potential

listening benefits. Undergoing cochlear implant surgery is the only option where the deaf ear is directly stimulated. Research has shown this can also ease tinnitus. All the other hearing solutions described work on delivering sound to the better hearing ear. If there is a viable auditory nerve and the system works well, the patient would need to participate in an intensive rehabilitation program.

Q A

Do hearing aids take a long time to get used to and how do I adjust to using them? Jawan Sayed: Getting used to hearing aids is a gradual process that will take time and patience on the user’s part. Often people try and draw a comparison between using hearing aids for the first time and using glasses for the first time. When you use glasses for the first time, you see the difference right away and your vision is restored but with hearing aids you have to get used to hearing sounds differently. Although hearing aids will improve your hearing making speech clearer and louder, it takes time to get used to processing speech and environmental sounds that you may have not been hearing clearly for an extended period of time. As a new hearing aid user you may be aware of sounds that others around you are not noticing and again this is simply because your attention is being drawn to sounds that you have not been aware of. This perception will settle as you adjust to the new sounds around you. Your audiologist will discuss the acclimatisation process and the best way to get used to your hearing aids at your fitting appointment. On a general note however it is recommended that you get accustomed to your hearing aids gradually. This means when you begin using your hearing aids ideally try and do so for one to two hours at home. Progressively begin using your hearing aids for greater lengths of time daily and in different circumstances (such as outdoors, meetings, in groups) over the course of a few weeks. This will help you get used to hearing all the different sound stimuli including noise. It is important to keep expectations in perspective and to understand that although hearing aids will improve your

hearing ability they will not give you perfect hearing and you may continue to encounter some hearing difficulties in more challenging environments.

I’ve seen so many adverts for selffitting hearing aids and cheap aids for sale on the Internet. I have read good reviews about one pair that seem to suit my situation. Do I really need to see an audiologist too? Emma Scanlan: You should always be evaluated by an audiologist. An audiologist does not simply test your hearing. They also measure how well you understand speech and how this may impact on your hearing device choices. The audiologist will also elicit other useful information about goal-setting and lifestyle discussions to establish realistic expectations and assist with making the best device choices. Once the hearing device has been selected, the audiologist will adjust it to meet your requirements as closely as possible. Many people find they need their device fine-tuned to meet their individual preferences after they have had a chance to use it in their usual environments. Others, especially those with additional needs and more severe losses, may require significant rehabilitation to build up their listening skills and to make the best use of their devices. The aid should be evaluated in the ear if possible to ensure that its settings are optimally matched for the hearing loss and that the level of sound going into the ear is safe. The volume and balance of sound going into the hearing system is influenced by the shape of the individual’s ear and how the aid sits in the ear. This creates a unique acoustic environment which is taken into account when you have your aid expertly fitted by an audiologist who will do validation measures of the aid in the ear. These measures can also help with troubleshooting any future issues with the aid. Hearing aids have many different possible settings and features and to get the most out of your device, it is helpful to work with someone who understands how those features work in different environments and can work in partnership with you to get the maximum benefit from your device.

Hearing HQ Apr - Jul 16

real pe Real people Real stories

Mark & Roslyn Wyburn live in Lake Macquarie, New South Wales. They have three children, Nicholas 14, Anna,11, and Luke, nine, who was born with bilateral sensorineural hearing loss. In July 2014, Luke was among the first children to trial the National Disability Insurance Scheme (NDIS). Here’s how they navigated the new system…

Hearing HQ Apr - Jul 16

Our third child, Luke, was born with moderate bilateral sensorineural hearing loss which was diagnosed at seven months and he received hearing aids a month later. His hearing loss was detected as part of medical checks into delayed developmental milestones. We embarked on a challenging and emotional journey which involved accessing hearing care and equipment from Australian Hearing. The NDIS commenced trial sites in 2013. Our area Lake Macquarie gained access to the scheme in July 2014. From a hearing disability perspective, we’re still accessing Luke’s hearing services and devices separately via Australian Hearing, and will continue to do so as it currently happens without the involvement of the NDIS process. If Luke had been younger, we would have been using the scheme to utilise early intervention hearing services, such as speech and language therapy, so our experiences will be directly relevant to families starting their journey. Just as everyone's family and child's disability is different, everyone's NDIS experience and outcome will be unique too. We hope you gather some helpful information from our participation. The National Disability Insurance Agency (NDIA), the scheme's administrator, has the approach: “Listen, Learn, Build, Deliver”, so processes and documents change as learning is gained from each trial site. Also, there may be some variations between each site as different methods are tried prior to full implementation of the scheme by 2020. The most important thing to do is educate yourself and get familiar with the NDIS website (www.ndis.gov.au) which is the main source of information. The first step in this process is to find out if you have NDIS eligibility and when your access will commence. Eligibility and rollout dates across Australia can be checked on the website at www.ndis.gov. au/ndis-access-checklist. From a future participant perspective, there is also information available on websites such as Every Australian Counts, Carers Australia, Disability Loop, NDIS Grassroots Discussion Group on Facebook and specific disability service providers (see links p24). Also, you can sign up for updates with NDIS and support groups and attend public information sessions run by the NDIA.

people ''

If you are eligible, the next step is to contact the NDIA and ask for an Access Request form. Unfortunately, there doesn’t appear to be a copy of this form on the NDIS website. You will need to provide evidence for the primary disability and other disabilities of your child and legal declarations on information-sharing, age and residency. Our GP assisted with our form and it was a big advantage having a doctor who had a long established relationship with us. To us, it was a very important document as it asks questions about the functional impact of the impairment of your child in undertaking activities. Areas covered included communication, social interaction, learning, mobility, self-care, self-management and other information that would assist in understanding a person’s needs. Each question has four tick boxes to pick ranging from no issues in that area of functional impact, to complete inability. This is where our story became a bit more complicated, and this may not be the case for others. At the time of our application, we had been participating in a program to assist with Luke’s development for around five years. This program covered a wide range of his needs, and a component included speech and language. As the support was through a private service provider, we had been self-funding the substantial costs for all this time. Our previous support for speech therapy through non-government charitable organisations such as The Shepherd Centre and Royal Institute for Deaf and Blind Children had ceased once Luke was school age. We believed our application to NDIS would need to justify this significant funding and we wanted to provide a sound case. There isn’t much room on some of the forms, so if you need to add more information either download a Word version and add text, or attach other pages to the original document. In preparation for NDIS, it is worthwhile taking the time to get your files and documents in order. We collated a detailed chronology of Luke’s major medical events and assessments. This took some time to do, firstly because it was very tough going over old wounds and secondly we had forgotten how much medical review we had been through in those first years. We also included copies of medical diagnoses and

assessments, such as those on speech. After submitting these forms and our associated documentation, NDIA sent out a confirmation letter that our request for access to the NDIS had been received and contact would be arranged within 21 days. We got an NDIS access receipt number which became our NDIS number. We were then contacted by phone to arrange meetings at the Hunter area NDIA office. These were confirmed by letter, with NDIA planning on conducting two meetings. Now we were in the planning phase. An NDIS planning workbook is completed prior to the first meeting. This form is about the child’s daily routine, the people and/or organisations that support them, equipment required, and your goals for your child in the areas of education, social participation, independence and health and wellbeing. You should also consider how you will manage your supports and funding and take these ideas with you to your planning meeting. To give you some idea of the way supports are categorised by the NDIA, and the actual NDIA rates for supports, have a look under the Providers section of the NDIS website under ‘pricing and payment’. It is important to prepare properly for your planning meeting with NDIA. Remember you are the expert on your child and your situation, not the planner. This is a big exercise in parent or personal advocacy. There is a requirement at the first meeting to bring your child along, after which it was not required. We had four interviews with NDIA, as our case was complex due to Luke’s specialised needs and our existing program arrangements. The first meeting also set the date that our NDIS plan and support started and payments were backdated to then. This was important in our case as the total process took seven weeks. As usual, it was a tough time going through our child’s issues with complete strangers and it dredged up a lot of emotion, so we both went to every meeting to support each other. As with specialist medical appointments, having two people there allows for different points to be made and more information to be picked up. We would strongly recommend you consider having an advocate or third party with you if you feel extra support would assist you.

Luke (top) and with his dad Mark (above), who is a committee member and regional representative for the support group Parents of Deaf Children.

Luke with his mum Roslyn

From all of the information submitted, and the interview, the planner developed a, ‘My NDIS Plan’ for Luke. This is along the same lines as the planning workbook form, describing Luke’s daily life, his supports, his goals, strategies to achieve these goals, and how progress or achievement will be measured. The second part of the ‘My NDIS Plan’ details what the planner has determined will be “reasonable and necessary” supports that will be funded by the NDIS. Importantly this part of the plan

will tell you the amount of funding NDIA will provide for your child. There will be details on how that support is managed. This needs to be discussed with your planner during your interview, so some thought needs to be given to this prior to the first meeting. We chose to self-manage funding as we already had our own system in place to pay for Luke’s support program and really wanted that to continue. Only a very small proportion of participants manage their funding this way. We had to establish a separate bank account in Luke’s name to manage all the financial transactions. The NDIA require you to keep receipts supporting your claims for five years, and they can audit you to verify the claims made, so it is very important to maintain a good financial record system. See the MyGov website Participant Portal for more information and how to submit claims. If you believe a proposed NDIS plan or decision is not satisfactory, you have three months to request an internal review. Further review after this process is via the Administrative Appeals

Tribunal at www.aat.gov.au. A year after commencing our participation, our first NDIS plan review was conducted in July 2015. A plan review was completed by us and submitted prior to attending a meeting with the planner. We again found it a difficult process as our planner had changed, requiring a complete reeducation of our situation. Our existing supports were critically reviewed. We had decided to bring along an advocate to our second review meeting following some initial feedback from the planner by phone and our realised expectation that it would be a challenging meeting. Now we are coming up to our second plan review in July, which will be conducted over the phone, so it will be interesting to see how the new process works.

For additional information see: • Every Australian Counts http://www. everyaustraliancounts.com.au/ • Carers Australia http://www. carersaustralia.com.au/ • Disability Loop http://www. disabilityloop.org.au/index.html

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ADVANCING THE POWER OF HEARING

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Image: Noah Lockyer courtesy of the Earbus Foundation of WA

The Earbus Foundation Research suggests Aboriginal and Torres Strait Islander (ATSI) children have the worst ear health in the world. They experience ear disease and hearing loss up to ten times the rate of the rest of the population which can lead to a life of poverty and disadvantage. A few years ago, a Parliamentary report showed that middle ear disease (or otitis media) had reached crisis levels with every child suffering from the affliction in some ATSI communities. But two years ago, a Government-funded outreach program called the Earbus Foundation of WA, was launched to take health professionals into the most affected areas throughout regional and remote Western Australia. Today, referrals of Aboriginal children with middle ear disease have been cut by almost 20 per cent. Ear problems in ATSI babies often occur within the first two weeks of life. On average, these children – and their families – suffer with middle-ear disease for 32 months of the first five years of life (the comparison rate is three months for non-Aboriginal children). Potentially, middle-ear disease can affect every aspect of early childhood development. It can also have a huge, lifelong impact on speech and language development. “On average around half the Aboriginal children in primary school classrooms across our country can’t hear what is going on. And if you can’t hear, you can’t learn,” says Earbus Foundation CEO Paul Higginbotham, a teacher, who has launched every WA Earbus mission since the concept commenced in 2007. Higginbotham brings his experience teaching the deaf to a clinical team including an audiologist, doctor (or nurse practitioner), ear, nose and throat specialist (ENT) and nurse and Aboriginal health worker. “Previously we had treated sequentially – screening first, GP a week later followed by ENT within the month. This time around we have the whole team working seamlessly together, treating on the spot and learning from and supporting one another,” he says. For Earbus Foundation, the best results have come from engaging with communities through schools,

Noah Lockyer aged 4

kindergartens, daycares and playgroups. Most experts agree that middle-ear disease in Australian Aboriginal children is largely a result of poverty and social determinants of health. The bacteria that cause middle ear disease thrive in deprived conditions such as overcrowded housing, passive smoking, poor hygiene and infection control, inadequate nutrition, unsustained breastfeeding, and poor access to primary health care. “For ATSI Australians the exit route from poverty is literally blocked by the glue in children’s ears. Without a good education, high school graduation and gainful employment, the cycle of poverty and disadvantage cannot be broken,” says Higginbotham. Last year, the program won the support of the Starlight Children’s Foundation which will join other partners including the Royal Flying Doctor Service and Aboriginal health services in Kalgoorlie and Port Hedland. “The partnerships with Aboriginal medical services provide on-the-spot access to medications, Aboriginal health workers, a mobile GP clinic facility, shared data collection and a raft of cultural and community connections,” says Higginbotham, whose mobile team mostly services at-risk children and adults up to 21 years old in the East Pilbara and Goldfields regions of WA. When the programs commenced in February 2014, 54 per cent of Goldfields

children and 52 per cent of Pilbara children were referred on for primary care. “We have reduced the Pilbara rate by ten per cent in two years and the Goldfields rate by 19 per cent.” says Higginbotham. Noah’s story Little Noah Lockyer lived in a daze until he discovered the Earbus, says his mother Madona. He was attending a playgroup next to South Hedland Primary School when his grandmother, a teacher, suggested he have his ears checked. “Back then, Noah was a bit of a loner. He was late with walking and didn’t talk much. It was like he was walking around in a ‘fog’,” explains Madona. “Noah seemed cut off from family talks and he was very quiet. He would sit close to the television and if I called him, he didn’t come,” she says. An ear check showed Noah had fluid in his ears and it was affecting his hearing. “The Earbus doctor and specialist spoke to us about a small operation to put grommets in his ears to get the fluid out and let the air back in,” says Madona. His operation in March 2015 was a success and he now attends a speech therapist and has turned into a lively chatterbox. “He is very happy and hears me really well. Since going to school, he knows all his numbers and the alphabet and likes going to the library. He is even singing more,” says Madona. Hearing HQ Apr - Jul 16

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here to help Many not-for-profit organisations around Australia and government agencies provide valuable support, advice and information on hearing issues. Please visit www.hearingHQ.com.au to find out more about any of these organisations and to link directly to their websites. For an organisation to be considered for listing they must be a not-for-profit, charity or completely free service. INFORMATION & SERVICES ACT Deafness Resource Centre - Canberra Information, referral and advocacy services T 02 6287 4393 TTY 02 6287 4394 F 02 6287 4395

The Royal Victorian Eye & Ear Hospital Cochlear Implant Clinic T 03 9929 8624 F 03 9929 8625 E cic@eyeandear.org.au

Audiological Society of Australia Inc Information on national audiological services T 03 9416 4606 F 03 9416 4607

Tinnitus SA Impartial tinnitus information and options T 1300 789 988

Australian Government Hearing Services Program Government assistance eligibility information T 1800 500 726 TTY 1800 500 496

Vicdeaf Advice and support for hard of hearing T 03 9473 1111 TTY 03 9473 1199 F 03 9473 1122

Australian Hearing Australian Government audiology clinics T 131 797 TTY 02 9412 6802 F 02 9413 3362

ADVICE & SUPPORT

Better Health Channel VIC Govt funded health & medical information www.betterhealth.vic.gov.au Conexu Foundation Technology based communication access T 1300 077 321 SMS 0448 180 677 Deaf Can:Do (formerly Royal SA Deaf Society) Services to SA deaf and hearing impaired T 08 8100 8200 TTY 08 8340 1654 F 08 8346 9625 Deafness Foundation Research, education & technology support T & TTY 03 9738 2909 F 03 9729 6583 Ear Science Institute Australia Implant Centre Help with ear, balance & associated disorders T 08 6380 4944 F 08 6380 4950 Guide Dogs SA.NT Adelaide based aural rehabilitation service T 1800 484 333 TTY 08 8203 8391 F 08 8203 8332 HEARnet - a better understanding of hearing loss & interactive ear diagram. www.hearnet.org.au T 03 9035 5347 Lions Hearing Clinic Free or low cost services in Perth T 08 6380 4900 F 08 6380 4901 Lions Hearing Dogs Australia Provide hearing dogs and training to recipients T 08 8388 7836 TTY 08 8388 1297 National Relay Service Helpdesk Telephone access service for hearing impaired M-F 9am-5pm, Sydney time SMS 0416 001 350 T 1800 555 660 TTY 1800 555 630 F 1800 555 690

Acoustic Neuroma Association of Australia Support and information on treatment E info@anaa.org.au T 03 9718 1131/02 4421 6963 Aussie Deaf Kids Online parent support and forum www.aussiedeafkids.org.au Australian Tinnitus Association (NSW) - Sydney Support, information & counselling services T 02 8382 3331 F 02 8382 3333 Better Hearing Australia (BHA) Hearing advice by letter, email or in person T 1300 242 842 TTY 03 9510 3499 F 03 9510 6076 Better Hearing Australia Canberra Hearing loss management & hospital kit T 02 6251 4713 Better Hearing Australia Sydney Hearing loss management courses and classes T 02 9744 0167 TTY 02 9744 0124 F 02 9744 7492 BHA Tinnitus Self Help/Support Group - TAS Support group for those with tinnitus T 03 6244 5570 BHA Tinnitus Management Services T 1300 242 842 Broken Hill & District Hearing Resource Centre Inc T 08 8088 2228 F 08 8087 9388 www.bhhearingresourcecentre.com.au CICADA Australia Inc For people with or considering cochlear implants www.cicada.org.au CICADA Queensland For people with or considering cochlear implants E cicadaqld@tpg.com.au

Parents of Deaf Children - NSW Unbiased information, support and advocacy T 02 9871 3049 TTY 02 9871 3193 F 02 9871 3193

CICADA WA For people with or considering cochlear implants Coordinator: Lynette 08 9349 7712

SCIC - Sydney Cochlear Implant Centre Gladesville, Newcastle, Canberra, Gosford, Port Macquarie, Lismore, Penrith T 1300 658 981

Deaf Children Australia Services for hearing impaired children T 1800 645 916 TTY 03 9510 7143 F 03 9525 2595

Telecommunications Disability Equipment Contact information for special phones: Telstra 1800 068 424 TTY 1800 808 981 F 1800 814 777 Optus 133 301 937 TTY 1800 500 002 The Deaf Society of NSW Information & services to NSW Deaf people T 1800 893 855 TTY 1800 893 885 F 1800 898 333 SMS 0427 741 420

Hear For You Mentoring hearing impaired teens T 02 8937 4150 E info@hearforyou.com.au Meniereâ&#x20AC;&#x2122;s Australia Dizziness & balance disorders support T 1300 368 818 F 03 9783 9208 Self Help for Hard of Hearing People (Aus) Inc Educational association T 02 9144 7586 F 02 9144 3936

EDUCATION Can:Do 4Kids - Adelaide Programs for deaf, blind & sensory impaired kids T 08 8298 0900 TTY 08 8298 0960 F 08 8377 1933 Catherine Sullivan Centre - Sydney Early intervention for hearing impaired children T 02 9746 6942 F 02 9764 4170 Cora Barclay Centre - Adelaide Auditory-Verbal Therapy for 0-19 year olds T 08 8267 9200 F 08 8267 9222 Hear and Say Centres - QLD Early intervention and cochlear implants T 07 3870 2221 F 07 3870 3998 RIDBC (Royal Institute for Deaf and Blind Children) Hearing and vision impaired education & services T & TTY 1300 581 391 F 02 9871 2196 RIDBC Hear The Children Centre - Sydney Early childhood intervention for hearing impaired T 1300 581 391 F 02 9871 2196 RIDBC Matilda Rose Centre - Sydney Early childhood intervention for hearing impaired T 02 9369 1423 F 02 9386 5935 Taralye Oral Language Centre - Melbourne Early childhood intervention & advocacy T 03 9877 1300 F 03 9877 1922 Telethon Speech & Hearing - Perth Early intervention program and specialist paediatric audiology services T 08 9387 9888 F 08 9387 9889 The Shepherd Centre - NSW & ACT Early intervention and cochlear implants T 1800 020 030 F 02 9351 7880

ADVOCACY & ACCESS SERVICES ACT Deafness Resource Centre T 02 6287 4393 TTY 02 6287 4394 F 02 6287 4395 Arts Access Victoria/Deaf Arts Network T 03 9699 8299 TTY 03 9699 7636 F 03 9699 8868 Cap that! Captioned for Learning www.capthat.com.au Deafness Council Western Australia Inc T & SMS 0488 588 863 Deafness Forum of Australia T 02 6262 7808 TTY 02 6262 7809 Deaf Sports Australia T 03 9473 1191 TTY 03 9473 1154 F 03 9473 1122 Media Access Australia T 02 9212 6242 F 02 9212 6289 NMIT Centre of Excellence - Vocational Education T 03 9269 1200 F 03 9269 1484

OTHER BHA Hearing Aid Bank - donate old hearing aids T 1300 242 842 T 03 9510 1577 Planet Ark - Find a battery recycler near you www.recyclingnearyou.com.au/batteries JobAccess - Disabilities workplace solutions T 1800 464 800 TTY 1800 464 800 F 08 9388 7799

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