14 October 2015

We acknowledge the traditional owners of country throughout Australia, and their continuing connection to land, sea and community. We pay our respect to them and their cultures, and to elders both past and present. We acknowledge the challenge that faces Indigenous leaders and families to overcome the unacceptably high levels of ear health issues among first Australians.

From ABC TV’s 7.30 Report Free hearing checks are becoming common in suburban shopping centres across Australia, but if you take up the offer, you may be surprised to learn the person testing you probably has no qualifications.

Better Hearing Consumer writes Recently several articles on what NOT to say to deaf people have been floating on Facebook. Although I’m no longer insulted by most of them, once in a while I have to grab my chin to keep my jaw from dropping to the floor.

Sport for deaf, hard of hearing youth Rugby League ‘Immortal’, Wally Lewis and daughter Jamie-Lee told federal parliamentarians this week about the benefits young people gain in personal and social skills, and health and well-being.

Annual General Meeting The Deafness Forum of Australia Annual General Meeting will be held in Sydney on Saturday 28 November.

Program transcript Broadcast on ABC Television, 5 October 2015 LEIGH SALES, PRESENTER: Free hearing checks are becoming common in suburban shopping centres across Australia, but if you take up the offer, you may be surprised to learn the person testing you probably has no qualifications. They'll also earn a commission on whatever product they sell you. It's an unregulated industry and experts warn people are increasingly falling victim to predatory sales practices and misdiagnoses. Elysse Morgan reports. ELYSSE MORGAN, REPORTER: It's after-school drama class at Waverley Primary in Sydney's east and one of the loudest in the group is Tobian Jones. It's remarkable because Tobian was born profoundly deaf. He got his first hearing aids at just three months old. It's not just hearing aids that allow Tobian to thrive in a normal classroom. What do you like to do best in class? TOBIAN JONES, STUDENT: Ah, maths. Yeah and play. And doing the sports and doing music. I love things. KIM WILLIAMS, SUPPORT TEACHER: We have some excellent technology in place in the classroom. This Dynamic is a remote microphone. It sends the signal straight to Tobian's hearing aids. This FM is also a remote microphone. He can carry this around the school when he goes off to sport or music. This can go up to each teacher. ELYSSE MORGAN: It's expensive technology facilitated by qualified staff and paid for by the Federal Government agency Australian Hearing. Tobian's father Alex, who's also profoundly deaf, understands the value of Australian Hearing. We speak to him through an interpreter. ALEX JONES, TOBIAN'S FATHER (translator): If he didn't have those supports, I'm reluctant

to say, but I don't think he'd be happy. He wouldn't be able to communicate with his friends. And maybe not as confident as he is now. ELYSSE MORGAN: This could all be in jeopardy if the Federal Government goes ahead with plans to privatise the agency. ALEX JONES (translator): Why would the Australian Government privatise for something that is working? It's working. GIRL (Australian Hearing ad): Before, when we played Chinese whispers, I would always mess up the word and my friends would always blame it on me. But now that I have my hearing aids, I can hear the word on the first go and it's really cool. ELYSSE MORGAN: As well as providing subsidised care to children and pensioners, Australian Hearing also competes with the private sector, selling hearing aids to the general population. It's a lucrative business making $12 million last year and it led the National Commission of Audit to recommend the agency be privatised. ALEX JONES (translator): That's the terrifying bit for us, it's so terrifying. It's vital for deaf children all around Australia to privatise Australian Hearing that would lead to risk, risk where children aren't well looked after. ELYSSE MORGAN: Privatisation will open up all of Australian hearing to competition, but that choice isn't necessarily a good thing. BILL VASS, DOCTOR OF AUDIOLOGY: I think that parents are going to be finding it very difficult to find out who they can trust. ELYSSE MORGAN: Bill Vass is a doctor of audiology. He's worried that no formal qualifications are needed to work in the industry. BILL VASS: In the private sector, the regulation is totally absent. Anyone can sell hearing aids or pretend to provide the services to hearing-impaired people. ELYSSE MORGAN: The major hearing aid manufacturers already own hundreds of clinics throughout Australia. One of these companies is likely to buy Australian Hearing. MAN (Advertisement): Something this good, however, must cost you an arm and a leg. MAN II: Not at all. Our cost isn't much more than a daily cup of coffee. MAN : A cup of coffee. That is very affordable.

ELYSSE MORGAN: Slick ad campaigns and free hearing tests are used to lure in clients like retiree Marcel Jones, who thought his hearing was going. MARCEL JONES, RETIREE: So I went in and made an appointment for a free hearing test and the test went for about 15 to 20 minutes. And at the end of the test, I was told, "You're definitely a candidate for hearing aids." ELYSSE MORGAN: Marcel had no idea the clinic was owned by hearing aid manufacturer intent on profit and he didn't check their qualifications. MARCEL JONES: She only told me that they range from $2,000 to $10,000. I couldn't do with anything under the $10,000 for my problem. She was really a trained salesperson. And I got sort of - felt that I couldn't say no. That was the position. LOUISE COLLINGRIDGE, INDEPENDENT AUDIOLOGIST: The tricky part for someone entering a clinic that's owned by a hearing aid manufacturer is that there they may be led to believe that the only solution for them is the hearing aid that they are offered. ELYSSE MORGAN: There are often big commissions on offer for those selling the hearing aids and high sales targets. LOUISE COLLINGRIDGE: I certainly myself have worked in a clinic where there was an expectation of a certain amount of turnover in every month. And in spite of being a very experienced audiologist and in spite of valuing codes of ethics and considering myself able to make clinical judgments, I found it very difficult to put that out of my mind for the reason that we're all - we're all in the workplace to please our management. ELYSSE MORGAN: The competition watchdog, the ACCC, is so concerned about misleading and unfair sales practices in audiology, it's launched an inquiry into the matter. As Tobian grows, he'll need new hearing aids and ongoing therapy. He and his family will have to find their own way through an unregulated and profit-driven industry.

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Have you heard? By Gael Hannan Recently several articles on what NOT to say to deaf people have been floating on Facebook. I understand the writers’ exasperation, having been on the receiving end of many of the comments. Although I’m no longer insulted by most of them, once in a while I have to grab my chin to keep my jaw from dropping to the floor. The inane remarks usually just reveal a profound ignorance about how hard of hearing or deaf people communicate. This is not their issue; they are asking questions out of curiosity. My dad always joked, when I asked him a question he couldn’t answer, “But you keep asking those questions, honey. That’s how you learn stuff.” So, hearing people, here’s something to learn: when a person tells you they are deaf or hard of hearing, you really don’t want to say: “Oh, you’d never know to look at you!” (We don’t see this as a compliment) “And yet you speak so well!” (Ditto) “How do you drive a car?” (You’re kidding me, right?) ”Can you read? (I’ve never been asked this, but friends of mine have. If someone did ask, I’d reply, “Only if the words are simple, with big letters. And the pictures help, duh”) “Do you use Braille?” (Oh, please, kill me now!) More forgivable, although irritating to people with hearing loss who use spoken language and are, like, actually speaking with this person, “Do you do, you know, the signing?” Hearing people find sign language beautiful and fascinating— which it is —but they extend the idealistic admiration to the signers themselves, simply for being Deaf. (Hearing people aren’t quite so starry-eyed about us oral folk with hearing loss.) This placing-on-a-pedestal is a source of annoyance to people with disabilities; we like to earn our hero status through something we have actually accomplished rather than for something we have no control over. The Better Hearing Consumer – the source of this article - addresses the personal experience of living with hearing loss. Editor Gael Hannan, and her occasional guest bloggers, explore every corner of the hearing loss life with humor and poignancy. Read more of this article at http://hearinghealthmatters.org/betterhearingconsumer/

Rugby League ‘Immortal’, Wally Lewis and his daughter Jamie-Lee were special guests at a briefing held in Canberra this week for federal politicians. The theme of a dinner at Parliament House, presented by Deafness Forum and Deaf Sports Australia, was participation in sports for deaf and hard of hearing children; and the benefits they gain in personal and social skills, and health and well-being. Wally Lewis AM, regarded as one of the greatest rugby league players of all time told parliamentarians about his family’s experience. “The 12th of June, 1991 was a day I will never forget. The doctor told us, "I am sorry to tell you, your daughter is profoundly deaf." “My wife collapsed to the floor and the doctor spoke to me for the next 10 minutes about everything we should know. I don't remember anything the doctor said.” “I went back to the (rugby league) team hotel, walking away from my wife and daughter, I felt like a disgrace to the family. How could I help them at this stage? But I had something else to try to achieve that night, a State of Origin match.” “I walked into the dressing room and I had made up my mind within seconds. I walked up to Toss (Dick Turner) and said, "Mate, this will be the last one, I have more important things in my life." Jamie-Lee Lewis said it was important to encourage young people to be active. “I remember kids at sports back in the day. Most of them didn't know each other. They were scared and didn't want to be there.”

“We need more awareness and funding so we can help youths to have better support for their future, like sports, getting jobs, and going to school and university,” Jamie-Lee said.

Photo at left: Deafness Forum chairman David Brady, Senator Bridget McKenzie (Nationals Party Whip in the Senate) with Wally Lewis. At right: Deaf Sports Australia chairman Phil Harper, CEO Garry West-Bail and Irena Farinacci. A message was read from Kevan Gosper AO, former athlete and past Vice President of the International Olympic Committee. “Unable to communicate as easily as others, some hearing impaired youngsters are inclined to feel more isolated and without the benefits of group activities risk lacking self confidence.” “These young people deserve equal opportunity and fundamental to all of this is financial backing. Continued, increased and ongoing government support is essential." Kevan Gosper said.

Special Minister of State Mal Brough MP, Warren Entsch MP, Sue Brough, with Wally and Jamie-Lee.

Wally and Jamie-Lee Lewis want hearing health and well-being to be a national priority in Australia. “Its affecting one in six young Australians and it is something they struggle to deal with for a considerable length of time.” “If given the right advice along the way, they can develop into fine young Australians that enjoy life just as much as everybody here tonight is fortunate enough to do so,” Wally said. Deafness Forum chairman, David Brady acknowledged the Australian Government has some components in place for what could be a world-class hearing health and well-being program. “The narrow framing of the Government’s approach is demonstrated by the fact that most people with hearing loss will not be able to access the National Disability Insurance Scheme because their hearing loss is not assessed as having an impact on their lives.” “What is missing is an over-arching, integrated policy, including a strategy for raising awareness in the community and educating service providers.” “Deafness in its varying degrees and the way it’s experienced is one of the most misunderstood disabilities, and because it’s invisible, it’s overlooked, neglected and forgotten,” David Brady said.

The dinner was an opportunity to also raise awareness among politicians of the value of captions at public events, in education settings and in government services. Ai-media chief executive Tony Abrahams (second from right) explained to Dr Andrew Laming MP, "Ai-Live is available at no cost to individuals in the workplace through the Employment Assistance Fund, and the NDIS."

People with a common form of hearing loss not helped by hearing aids achieved significant and sometimes profound improvements in their hearing and understanding of speech with hybrid cochlear implant devices. Researchers at 10 medical centers and private clinics in the United States implanted hybrid cochlear implants into one ear of 50 men and women. All study volunteers had badly damaged high-frequency, inner-ear hair cells, which prevented them from understanding speech, especially in the presence of background noise. All still had sufficient low-frequency hearing, which allowed them to tell apart some sounds and forestalled any use of a regular cochlear implant. A year after receiving the device, 45 study participants showed overall improvement in their hearing and speech recognition, and no one's hearing and speech recognition got worse. The hybrid implant differs from the traditional device in that it has a shorter electrode (less than 2 centimeters long) that does not have to be inserted as deeply into the spiral-shaped sensory structure (the cochlea) in the inner ear. When placed correctly, the technique preserves more residual, natural, low-frequency hearing and augments high-frequency hearing with electrical stimulation. The loss of high-frequency hearing had left all study participants "in a difficult spot." Many were failing at work and in social environments because of their inability to hear and understand speech. From Science Daily, http://www.sciencedaily.com/releases/2015/07/150728120202.htm

NDIS Transition Planning Workshops A series of transition workshops were held in August and September 2015. A summary of the issues raised at the transition workshops and the powerpoint presentation are available below.

Background By mid-2019, when the National Disability Insurance Scheme (NDIS) is fully rolled out, a significant portion of existing Community Service Obligations (CSO) clients and some other eligible clients who currently receive services under the Hearing Services Program (the program) will transfer to the NDIS to receive hearing services.

It is important that this transition is as seamless as possible and that those elements of the program which work well for clients are not lost. To minimise risks to client outcomes, stakeholder consultation will be ongoing during the period leading up to mid-2019. The NDIS Transition Planning workshops signal the commencement of this process and stakeholder engagement.

The workshops and proposed work packages Workshops were held in Sydney and Brisbane in August 2015 and in Melbourne and Perth in September 2015, with the intent that further workshops will be scheduled provided that there is sufficient interest (noting a further planning workshop is scheduled for Adelaide in October 2015).

The aim of the workshops is to share information about the NDIS and hearing services and to consult with stakeholders on the activities which will need to form the high level transition plan, including identifying and describing the critical pieces of work that need to occur to support the transition. Consistent with the partnership approach required for transition planning, representatives from the Department of Social Services and the National Disability Insurance Agency (NDIA) also attended the workshops.

Office of Hearing Services

www.hearingservices.gov.au 1800 500 726 hearing@health.gov.au

Twelve proposed work packages identified as necessary for transition informed the direction and group discussions of the workshops, as follows

• Access to the NDIS (eligibility)

• Paediatric referral pathway and national data collection

• Quality safeguards and client outcomes

• Engagement and communication

• Hearing related supports (devices and therapies)

• Pricing of these supports and funding

• Supply of hearing devices

• Rural and remote access

• Roles and boundaries (including support for children at risk of permanent hearing loss)

• New arrangements for the Hearing Services Program

• Legislation changes

• Transition governance

The Office of Hearing Services (the Office) appreciates the high level of interest in these initial workshops from a broad range of stakeholders including: representatives from existing contracted service providers, Practitioner Professional Bodies, hearing practitioners, parents of children with hearing loss, early intervention service providers, hearing loss and early intervention services advocacy groups for both adults and children, representatives from Aboriginal and Torres Strait Islander advocacy groups, representatives from rural and remote service delivery agencies, researchers, device manufacturers, and representatives from hearing resource centres.

The broad mix of stakeholders at the workshops enabled wide ranging discussion regarding service delivery considerations, including for rural and remote clients and the unique challenges faced in these areas, as well as to draw on the experience of those clients of the current hearing program and their perceptions of the challenges associated with transition.

Issues raised There are many issues which need to be worked through and the current level of uncertainty was reflected in the discussion, in particular the need for clarity about

• Eligibility requirements for the NDIS and how services are delivered

• What these changes may mean for paediatric service delivery under a contestable model

• How services will be reimbursed and the schedule of fees

• The role of planners and how they access expert advice to determine what hearing related devices and therapies are reasonable and necessary to achieve a person’s individual goals

• Future device supply arrangements, replacements and repairs

Office of Hearing Services

www.hearingservices.gov.au 1800 500 726 hearing@health.gov.au

The roles and boundaries for the states/territories and the Commonwealth in providing hearing care related services in education, newborn screening, primary care settings (hospitals, community and outreach settings), health programs and social services.

Stakeholders also identified the need to

• Maintain access to quality paediatric services without compromising the current paediatric referral pathway upon identification of hearing loss

• Preserve access to services for clients in rural and remote areas, including the need for services to be targeted and appropriate for each community

• Monitor the application of the NDIS access criteria and provision for any program clients who are ineligible for the NDIS

• Ensure that clients continue to receive appropriate services by qualified practitioners under a quality assured framework

• Protect the independence of clinical advice for parents/guardians of infants/young children with hearing loss

• Develop a national clinical data collection for all clients receiving government funded hearing services

• Develop a strong communication strategy and maintain active engagement with key stakeholders with targeted communications for different cohorts

• Consider future supports such as the use of tele-practice models for service delivery.

Next steps The key areas identified by stakeholders fit within one or more of the twelve proposed work packages, which will form the foundation of a NDIS Transition Plan. A Communications Strategy will also be developed to support the Transition Plan. Over the coming months these documents will be developed and placed on the Office of Hearing Services website, along with further updates and opportunities for stakeholders to be involved in the activities needed to support the transition.

The Office is committed to ensuring a smooth transition and will continue to update stakeholders as work continues on the Transition Plan. It is likely that further workshops will occur and interested parties are encouraged to register for these workshops on the program website at www.hearingservices.gov.au.

Also, you can subscribe to the RSS feed on the program’s website which will be updated routinely to provide further information to clients, providers and other interested groups regarding the transition of hearing services to the NDIS.

Office of Hearing Services

www.hearingservices.gov.au 1800 500 726 hearing@health.gov.au

Notice of Annual General Meeting The Deafness Forum of Australia Annual General Meeting will be held in Sydney on Saturday 28 November. University of NSW, Kensington campus AGSM Building Gate 11, Botany St, Kensington Free off-street car parking Frequent buses depart Central Railway Station for a journey of approximately 25 minutes Light luncheon from 12.30pm Meeting commences 1.30pm and is expected to run for 90 minutes Principal business Minutes of the previous annual general meeting Receipt of the annual report and audited financial statements Appointment of auditor Declaration of election of directors Proxies A member unable to attend the Annual General Meeting may appoint a person as their representative. By giving your proxy to a representative, your vote will be counted the same as if you were voting in person. S/he need not be a member of Deafness Forum, but must be present at the Annual General Meeting. Alternatively, a member may appoint the chairperson of the meeting as their representative. Some members will be entitled to two proxies – they may be both a member of Deafness Forum and an authorised representative of an organisation that is a member of Deafness Forum. If you wish to obtain a proxy form, drop us a line at info@deafnessforum.org.au

Items in Deafness Forum communications incorporate or summarise views, standards or recommendations of third parties or comprise material contributed by third parties or sourced from items published in the public domain. Our intention is to attain balance and be representative of all views within the sector we represent, however this may not be attainable in particular communications. Subjective censoring of materials will not occur. Third party material is assembled in good faith, but does not necessarily reflect the considered views of Deafness Forum, or indicate commitment to a particular course of action. Deafness Forum makes no representation or warranty about the accuracy, reliability, currency or completeness of any third party information.