Sound Matters | Spring 2022

SOUND MATTERS LATEST NEWS AND UPDATES FROM THE HEARING HOUSE

SPRING 2022

Sky’s the limit for mountainbiking Torbay teen PAGE NO 01

Farewell to our patron Phil Ryall PAGE NO 11

Matthias takes centre stage in Canberra PAGE NO 05

What you need to know about rehabilitation PAGE NO 15

Upgrades for our N5 users PAGE NO 07

Sky’s the limit for mountain-biking Torbay teen Don’t tell 17-year-old Emma Clipstone there’s anything she can’t do. She’ll hear you but she won’t listen.

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Emma Clipstone, 17, is a CI user and competitive mountain biker.

The Year 13 Westlake Girls High School student is on the cusp of breaking into the international mountain biking circuit. She is also deaf and uses cochlear implants to access sound.

Last year, she gained third place in the North Island schools champs in Palmerston North, then finished in fifth place in the under 19 category at the New Zealand nationals in Christchurch.

Emma is supported by The Hearing House, where she receives regular audiology mapping and support with the Cochlear equipment.

This year she’s added North Island Secondary School Cyclocross Champion to her titles. She says the 2021 nationals was an incredible event, “the course was almost like a world cup circuit, really technical. There was a gap jump and rock gardens.”

“We’ve got so much support in New Zealand with our cochlears,” she says.

While some might see deafness as adversity, Emma sees it as a minor setback that doesn’t prevent her from pursuing her passions.

For four consecutive years she’s won her age categories in the Auckland School Series mountain biking competition, taking out the under 15, under 17, and under 20 female titles.

At another 40km race in Rotorua, Emma came in as the first woman overall and first in the under 20s age group.

“I”m getting closer and closer to the boys which is really nice,” says the determined teen.

Emma’s love for biking began early, at the age of five when she started racing BMX. She tried mountain biking soon after and has never looked back.

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Brian Tangaroa

“The races are so much fun. Being at the start line when the boys go first, catching up to them and trying to beat them,” she says.

Coach Mark Leishman says Emma’s motivation and enthusiasm for the sport is steering her on a promising trajectory.

“She’s doing so well so quickly at the age she is. The limitation is what she puts on herself, and there isn’t really any limitation she’s putting on herself at the moment,” he says.

TACKLING CHALLENGES HEAD ON This positive attitude and willingness to tackle challenges is one that Emma has carried through her life.

“I love trying all sports. I’ve done gymnastics, even with my ‘cochlears’ [the external part of the cochlear implant, also called a speech processor]. I use wig tape and I put my hair over my coils so they wouldn’t fall off.”

She swims too and, while she’s got waterproof covers for her speech processors and it was “really cool to hear what it sounds like underwater”, she prefers to swim without access to sound.

Her deafness was likely caused by her premature birth at 28 weeks. She received her first cochlear implant aged two and a half, and the second one 10 months later in South Africa. There, she learned how to process the sound she receives through her cochlear implants to communicate.

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Emma has been in mainstream schools since she was six years old. She and her family arrived in New Zealand from South Africa in 2016, and has had a resource teacher since she started at Westlake Girls High School in Year 9, which she receives through Ko Taku Reo. While initially uncomfortable with the attention that came from having the additional teacher in class, Emma has adapted to it and appreciates having the extra help and advice.

“I do get tired at school sometimes and need a hearing break, that’s what I call it, because my brain’s working harder compared to other people,” she says.

Being able to hear and communicate with her cochlear implants has fostered her love of riding, she says.

“One of my closest friends who I race with is from Taupō. I can talk with her when we do our warm up together.

“I also really love riding in nature. I love hearing all of the different sounds. That’s why cochlears are so nice.”

She says people often assume that children with disabilities aren’t going to be as good at sports as their mainstream peers but being deaf has never stopped her.

Her advice to others facing adversity? “Don’t listen to anyone who has an opinion you don’t like. You do you and give it a go.”

Although Emma rises to most challenges she faces, the biggest sticking point for her is linked to her success.

Two of the prizes she’s won have been headphones, which she is unable to use and has reluctantly had to hand over to her grateful brother.

“So many people I meet don’t even realise I’m deaf. It’s the little things, like winning those headphones, that’s a bit of a challenge."

But not enough to slow her down. Emma has eyes on the international circuit.

“I’m thinking about my future and I’m interested in studying Speech and Language Therapy as I always enjoyed these sessions with The Hearing House as a young child. I think I’d enjoy helping others learn how to speak and communicate,” she says.

However, for now her focus remains on professional cycling.

“I want to go overseas and do international races.”

Coach Mark says Emma isn’t far away from reaching that dream.

“She’s on the cusp. Once she’s in the under 19 national age group, international races become available. This is her first year, she’s still got another year in this category.

“Assuming things settle down internationally and there will be a world championship next year, she’ll be in line for potentially making the team.”

Until then, Mark says it’s his and her family’s role to keep the reins on Emma “so she doesn’t push it too hard to do too much too soon, which is a good challenge to have.”

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8-year-old Matthias takes centre stage for Power of Speech The Power of Speech returned in September to challenge the perceptions of what children with hearing loss can achieve.

This year, it took place on Thursday 8 September at the Australian Parliament House in Canberra, and Auckland cochlear implant user Matthias Berndt took centre stage along with six other 7 and 8-year-old cochlear implant users from First Voice member organisations around Australia.

Matthias was diagnosed with sensorineural hearing loss in both ears as an infant, and received cochlear implants at age two.

He loves music and the performing arts, as well as taking part in sports and other extracurricular activities with hearing friends.

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During the event, Matthias and the other children presented short speeches to key policymakers around the theme ‘Connections’, proving that deafness is not a barrier to human connections and how early intervention support and cochlear implants have been helping them reach their full potential.

Matthias and the other children also shared with politicians how they defy commonly held misconceptions about growing up with a hearing loss.

Our CEO Dr. Claire Green was also in Canberra for the occasion and says Matthias was a wonderful representative of The Hearing House and the work we do.

“Hearing Matthias and the other children speaking so eloquently and confidently shows first-hand the integral role that our team can play in the lives of those who are hard of hearing,” says Claire.

The Hearing House CEO Dr Claire Green and Matthias (left) flew to Canberra for The Power of Speech. They are pictured here with Jeremey from CanDo4Kids.

Scan this QR code to see Matthias delivering his speech.

Matthias pictured with his family, who flew over to support him.

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4 8 Adult CI users enjoying upgraded N7 technology Our kiritaki - clients who were using Cochlear Nucleus 5 and 6 Processors have had an exciting past year!

Since June 2021, we have upgraded 84 cochlear implant users to the N7 model.

Of the upgrades, 67 were for our publicly funded N5 users as a result of additional funding we received from the Northern Cochlear Implant Trust. The remaining 17 were upgraded because their equipment was found to be beyond repair.

Some kiritaki - clients were upgraded at The Hearing House, and some our adult team met on outreach across Whāngarei, Waikato and Bay of Plenty. The team has also trialled a few direct-to-home upgrades with the help from Cochlear.

Our kiritaki - clients who have received the upgrade report clearer sound quality, reduced bulkiness on the ear and have been introduced to direct streaming to compatible smartphones.

Derek Butcher is one of the N7 recipients who is “thrilled” with his upgrade, which he received at Whāngarei Outreach in February. It replaces the N5 processor he received in 2013.

“The biggest change initially was the clarity of the N7 but Jessica said this was most probably due to the age of the N5 giving poor quality as electronic components had deteriorated.”

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However, Derek says the biggest thrill has been in the N7’s bluetooth technology, which allows him to have his computer and phone calls directly streamed into the CI. “The phone app has also been a big improvement allowing one to monitor the CI and make changes quickly. The scan and group settings are definitely superior and the speed at which it responds to noise changes I find remarkable,” he says.

He is also enjoying the smaller size and lighter weight of the N7 - “I hardly know I have it on and have to check it’s there now and again.”

2022 IN NUMBERS

Since January we have carried out…

OUTREACH CLINIC DAYS

REFERRALS

SWITCH ONS

16

24

37

137

18

67

children

adults

children

adults

children

adults

ASSESSMENTS

CI UPGRADES

78

117

33

60

children

adults

children

adults

Would you like to be a CI mentor?

Many future cochlear implant recipients have never met anyone who has a CI. We want to change that.

We’re looking for cochlear implant users to become mentors to cochlear implant candidates. As a mentor you would be available to answer their questions about what life is like with a cochlear implant, what it means for daily life, how you might hear with a CI or how the surgery went.

To register your interest, please follow this link / scan this QR code.

TROUBLESHOOTING CLINIC Daily appointments are available for our kiritaki - clients to work through basic troubleshooting, repairs and part replacements for your cochlear implant, hearing aid or accessories.

If your cochlear implant or hearing aid is not working, here's what you need to do: 1.

Call us on 09 579 2333 or email reception@hearinghouse.co.nz to request a troubleshooting appointment. These can be in person at The Hearing House or over the phone.

If we hear from you before midday you can expect to be booked in on the day.

If we hear from you in the afternoon we will book you in the following day.

We will try to match people living in the same regional location, are of similar ages or share interests.

Please note, we are unable to provide CI or hearing aid adjustments during these sessions. If you need programming, you will need to make a separate appointment with your audiologist.

If there is a future recipient in your area, we will email you to seek your permission to introduce you by email.

If you know what you need, you can purchase batteries or equipment via the Cochlear store or by emailing equipment@hearinghouse.co.nz.

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School holiday workshops & a hui...

The Hearing House was bustling with activity through the July and October school holidays with a number of exciting events taking place, including workshops, a hui, a Matariki morning tea and a connection group in Hamilton!

Our team put a lot of work into the July workshops for different age groups and we have had fantastic feedback from our families and young people. The main theme was self-advocacy and making connections.

Seven-year-old Brielle attended one of these workshops two months after being switched-on, and wrote a song about what she took away from the group which her mother shared on Facebook and with us.

Scan the QR code to see Brielle's song.

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End of year celebrations

UPCOMING

EVENTS

at The Hearing House

Wednesday 23rd November

Kai + Kōrero

Join us for a morning of connecting at The Hearing House to celebrate the end of a big year – we will provide some kai and activities on the day, all ages and stages welcome, kiritaki/clients and whānau/family.

RSVP to tara@hearinghouse.co.nz before Friday 11 November.

Are you sorted for the festive season?

Now is a good time to take a look at your equipment, and make an appointment with us so you’re sorted over the Christmas period.

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Farewell to Patron Phil Ryall Our longstanding patron Phil Ryall passed away in September.

Phil’s commitment and dedication to our work cannot be underestimated.

He established The Hearing House alongside Sir Patrick Eisdell-Moore in 1996 and continued to provide enormous support throughout his life - as a board member, patron, mentor and extraordinarily generous supporter.

There is no legacy more fitting than the one he leaves in the wonderful work our team and supporters have delivered over the past 26 years, and will continue to deliver into the future.

We are forever in Phil’s debt, knowing that our work today is built on the shoulders of those who came before us. His humble and noble spirit and values will live on through our work, in which your donation will help us provide lifetime support to those who depend on cochlear implants to access sound.

Phil is pictured here for Loud Shirt Day in 2010. This picture was shared with us by the Clevedon Bridge Club.

Have you joined our Facebook community groups?

These are private community spaces you to connect with one another, ask questions and seek advice from our team.

There is a page for our families, and one for our adults. Scan the QR codes to join, we’d love to see you there!

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E T A D E H T E V A S Friday

24 February

LOUD SHIRT DAY 2023 Scan the QR code to

DONATE NOW

Wear your brightest outfit for a day this February and raise vital funds to help us support you!

Loud Shirt Day is on Friday 24 February ahead of International Cochlear Implant Day (25 February) but you can get LOUD with us in any way and on any day you like.

Loud Shirt Day is the national fundraising campaign for The Hearing House and the Southern Cochlear Implant Programme (SCIP) – the only two charities in New Zealand dedicated to helping children and adults learn to listen and communicate with the aid of cochlear implants.

To register or learn more, visit

LOUDSHIRTDAY.ORG.NZ #GETLOUD2023

HELP US SUPPORT ALL NEW ZEALANDERS WHO ACCESS SOUND WITH COCHLEAR IMPLANTS 12

Team updates Welcome to the team Tara Barr

CLINICAL ADMINISTRATOR I have more than 10 years' experience working in Audiology customer service and hope to be a valuable addition to The Hearing House. In my spare time I love to travel and spending time with my friends and my cat, Muffin. My favourite quote is from Walt Disney “Laughter is timeless, imagination has no age, dreams are forever”

Gracie Adams

SPEECH AND LANGUAGE THERAPIST I’m here to support and work with our 8 to 19-year-old clients. I might be working with you if your child receives a cochlear implant for the first time or I might be working directly with a young person to support their communication, social skills, or language development. I get to work closely alongside the audiologists to provide education, information and therapy guidance - and I love it!

Congratulations

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Soniya Naido

Grace Morton

Our clinical administrators are now working together as one team, coordinated by the wonderful Soniya. Please join us in congratulating Soniya in her new role as Clinical Administration Coordinator.

Speech and Language Therapist Grace is now on maternity leave settling into her new role as Mum to Katie.

Celebrating CI surgeon Dr. Bill Baber

In 1995, three and a half-year-old Nick Jones was among the first children in New Zealand to receive a cochlear implant under the expert care of pioneering surgeon Dr. Bill Baber.

Almost three decades later, Nick and Bill’s paths crossed again.

This time within the walls of The Hearing House.

Nick, now 30-years-old, is in his final year of study to become an audiologist. While Bill, our country’s longest serving cochlear implant surgeon, is putting down his scalpel after more than 35 years.

Scan the code to read their story here.

Their encounter was a chance to reflect and celebrate the lifechanging technology that has had a deep impact on them both.

Nick wants to hear from parents & guardians of young CI users aged 0-15 years...

As part of his study to become an audiologist, Nick is undertaking research to help inform decision-making about cochlear implantation and support for children and their parents/whānau.

If you would like to share your experiences and perspectives on the cochlear implant process and support services, you can scan the QR code to complete his 15-20 minute online survey.

A message to Bill from Adult Team Leader Caroline Selvaratnam As a surgeon the impact that Bill has had on cochlear implant services in New Zealand is unmistakable. Over 30 years ago he was part of the team that planned and developed CI services in NZ and since that first inception, Bill has worked tirelessly to ensure that NZ CI services are world class. From the hundreds of people that he implanted, to the surgeons that he has trained, to the boards that he has sat on, Bill has always placed the needs of those he worked with ahead of his own self. His voice, while always respectful and considered, helped push through many of the changes that we take for granted: no capped funding for children, bilateral implants for our paedeatric population, predictable base line funding for adults.

On a personal note I feel lucky to have worked with Bill in a variety of settings and have seen his exceptional surgical skills and his humanistic approach to his work. He always made sure that clients felt safe, heard and supported on their hearing journey; I still find myself using some of his turns of phrases when I try to explain the complexity of a CI to someone who is not used to medical jargon. As colleagues, Bill always made sure that we felt respected and listened to, always focusing on the achievements that can be made when teams work together.

The Hearing House team and I want to express our excitement for Bill as he moves into this next stage of his life.

We will all miss having such an exceptional human being in our professional lives.

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Meet our rehabilitationist, Bronwyn

Working alongside our audiologists and kaitautoko kiritaki support navigator, Bronwyn is our amazing cochlear implant rehabilitationist helping adult cochlear implant users regain confidence in their communication.

Our approach to rehabilitation is holistic where a person's language and culture is valued.

Bronwyn is a speech and language therapist who is proficient in New Zealand Sign Language.

Her goal is to give our cochlear implant users the skills they need to have confidence communicating with the aid of their hearing technology.

Whether it be spoken or Sign, Bronwyn is here to support you on your hearing journey.

The Hearing House cochlear implant rehabilitationist Bronwyn Bailey

Beyond speech and listening therapy Rehabilitation is being part of a person’s hearing journey, involved with them, their family, their interests and understanding why they wanted a CI, says Bronwyn.

"Often people who are hard of hearing feel quite isolated so we want them to reconnect and feel like they’re contributing to family and community and belonging again.

"I want to find out what they want to get back to doing, and what the barriers have been. It could be to reintegrate socially with family visits, returning to the workforce, going to bridge games or meeting friends at cafes again."

With this knowledge Bronwyn can help you set functional goals tailored to your individual needs.

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What does rehabilitation look like?

1. Building confidence Bronwyn begins by working with you to build your listening skills to a point where you feel comfortable using a the phone - "this takes a lot of practice."

2. Utilising technologies Next she will identify what technologies are available to help you meet your specific goals.

"If it's returning to work, we’ll look at accessories like mini mics for meetings or better communication with background noise."

If your goal is to enjoy watching TV, she will guide you on the assisted technology available that streams sound directly to your implant.

3. Communication strategies Finally, Bronwyn will help you do some training on strategies to support your communication.

"It might be advocating for yourself in terms of what you need from your workplace or your family. It could be using assisted technology, and knowing there’s a speech to text app that you can use at the doctors if you can’t hear them through the mask," she says.

"It’s not all about the listening, it’s all about effective communication strategies, when there's been a breakdown and how to repair that.

"That’s the difference between a young child who is learning to hear with a cochlear implant, and an adult who has already learned language - whether it be spoken or sign language - and how they can now use their cochlear implant to support them in their communication."

Bronwyn (right) with cochlear implant user Gordon Taylor and his support person Mary.

Seeing success Rehabilitation is more than training your implant, ear and brain to interpret the new sound, it's about enjoying your new hearing.

"I love it when someone tells me they’re attending their first social events since their hearing got to the point that hearing aids don’t help anymore.

"For me, success is knowing that they feel confident to attend these sorts of events again or have returned to chairing their local bridge club or running a coffee group at their retirement village, where before it was easier to isolate because communication was too hard. It really is about quality of life.”

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Expanding our services to support more tamariki with hearing loss

More than 100 young learners from Ko Taku Reo are now receiving dedicated care from our paediatric audiologists - and they don’t need to leave their school grounds.

Ko Taku Reo is New Zealand's provider of education services for Deaf and hard of hearing (DHH) children.

The partnership is a new approach to audiological care, which enables our paediatric audiologists to visit Ko Taku Reo tamariki in their Kelston and Ormiston provisions during the school day.

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The Hearing House CEO Dr Claire Green says it’s wonderful to be supporting tamarki with different degrees of hearing loss, not only those who use cochlear implants.

“People are at the heart of what we do. We’ve hired more team members so we can deliver a service that understands and meets the needs of our newest kiritaki clients and their whānau.”

“By coming to them we’re hoping to build a more holistic relationship with these tamariki, while taking the burden of hearing care off of the parents,” says The Hearing House Clinical Director Holly Teagle.

Holly says The Hearing House is driven to be a centre of excellence and recognised as a leader for clinical best practice, innovation, research and training.

The service expansion is part of The Hearing House’s contract with the Ministry of Education to support school-aged children with different degrees of hearing loss. Last year, this saw school-aged cochlear implant recipients return to our care.

“This partnership not only allows us to provide evidence-based best practices that support tamariki with hearing loss to achieve their full potential but provides Auckland University audiology graduates the opportunity to look at innovative clinical best practice in action.”

Welcome boost for Cochlear Implant Repair Fund Our fund helping many adult cochlear implant users cover the costs of unfunded repairs has received a generous boost thanks to our long-standing supporter, the Quota South Pacific Area Scholarship.

Quota’s motto is ‘We Share’ and is known worldwide for their service to disadvantaged women and children, and those who are deaf or hard of hearing.

QSPA Scholarship Trustee Karen Morrison says the donation is the result of the organisation’s “devastating” decision to dissolve their scholarships.

The Hearing House CEO Dr Claire Green says The Hearing House is deeply grateful to be the recipient of such a generous donation from the Quota South Pacific Area Scholarship.

They have provided New Zealand Educational Scholarships and study grants for first year school leavers, and second year Master of Audiology students at Auckland University since 1992.

“This fund will help so many people and with the way the world is heading – this kind of support is even more important and significant.”

Claire says the Cochlear Implant Repair Fund, which was established last year, depends on regular and ongoing donations to be successful long term.

this kind of support is even more important and significant

“Receiving $130,000 (AU$120,000) at this point in its existence means we can continue to ease the financial burden faced by many adult cochlear implant users when their equipment fails over the coming years.”

“Redirecting these funds to The Hearing House will create a lasting legacy to those whose financial difficulties with their cochlear implants have been a burden and knowing this gives all of our Quota members great joy.

“We have great faith in The Hearing House team's undertaking to strengthen this program,” says Karen.

PLEASE DONATE

Scan the QR code to learn more about the fund and how to donate.

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Monday – Friday: 8am - 4.30pm 251 Campbell Road (Entrance on William Ave) Greenlane, Auckland 1061 PO Box 74-022, Greenlane Auckland 1546, New Zealand 09 579 2333 or 0800 2 LISTEN / 0800 254 783 09 579 2310 reception@hearinghouse.co.nz