Annmaree Watharow, Susannah McNally, Skye Wallace and Amanda Francis
Annmaree, Amanda and Skye from the Dual Sensory Impairment Project travelled to Helsinki for the Nordic Network for Disability Research conference held at the University of Helsinki in Finland.
Annmaree, assisted by Amanda (social-haptic communication) and Skye (driving the tech devices and communication), presented on one aspect of the survey we conducted last year, asking:
What basic knowledge about dual sensory impairment or deafblindness (DSI) do people actually get at or after diagnosis?
Who gives it to them?
What do they still need—and in what format?
Why is talking about DSI so important?
DSI, also called deafblindness, is not rare. Australia’s 2022 Survey of Disability, Ageing and Carers tells us that roughly 7 in every 1,000 Australians and 33 in every 1,000 over the age of 65 live with a combination of hearing loss and low vision. This increases to 270 in 1000 by age eighty. This data is almost certainly vastly underrepresentative of the true number. DSI is regularly missed by policymakers, professionals, by families and, crucially, by older adults themselves. ‘I’m just getting old’, they think. This means any of the research or data collection that relies on self-identifying as having DSI or deafblindness is missing a lot of people who don’t know they have these.
Yet service systems remain fragmented, workforce expertise is thin on the ground, and the information available to older adults resembles a patchwork quilt sewn together by chance rather than design.
We showed the video so that the audience could see and feel what DSI can be like in real life. This is verbatim testimony performed by an actor with disability
Lucy’s Story Video:
Vimeo link: https://vimeo.com/844799688?share=copy
Password: HWLucy
This video of Lucy reminds us that DSI is never just clinical. It is intensely human and, as our participants told us again and again, it is wrapped in “grief, grief, grief”. The grief of losing cherished hobbies, ease of conversation, spontaneity, driving, independent travel. Recognising that emotional weight became a central thread of our study.
Study snapshot:
First, the design.
We steered this ethics-approved research with the people most affected, older adults with DSI, right at the helm. Our framework was mixed methods: a combination of numbers and rich stories.
Second, accessibility.
A survey isn’t inclusive unless everyone can actually use it, so we offered eight different formats: large-print, extra-high-contrast, hard-copy Braille, an Auslan video version, a phone-based option, face-to-face interviews, and a couple of tech tweaks for screen-reader users. If someone needed a different doorway in, we built it.
Third, who answered?
We received 223 completed surveys.
- About a third, 35%, were people living with dual sensory impairment themselves
- 15% were family members or informal carers
THIS MEANS 50% HAD LIVED EXPERIENCE OR LIVED KNOWLEDGE
- Another 32% were professionals: audiologists, OTs, nurses, support coordinators and the like.
- 9% were paid support workers.
- 5% worked for disability organisations
THIS MEANS ALMOST HALF WERE PROFESSIONALS AND PRACTITIONERS
But what is truly inspiring is that 9% ticked lived experience boxes AND professional practitioner boxes. This breaks the binary that people with dual sensory impairment are only service users and the cared for.
Fourth, experience.
More than half had lived or worked with deafblindness for over fifteen years, so we were drawing from a very deep well of expertise.
That’s the snapshot—now for what the participants told us:
223 voices and the six key themes
1. There is an information desert
40% of the older adults and carers in our survey told us they simply couldn’t find good, plain-language information on combined sight-and-hearing loss. Professionals did a little better, but one in four, 24%, still felt under-prepared to work with clients with DSI.
2. Formats matter
One participant nailed it:
‘When you send appointments in low-contrast grey on grey, you lose me at hello.’
What people asked for was choice, large-print and extra-large-print hard copies; audiobooks; Braille; e-books that play nicely with screen-readers; and every video captioned up front. In short: not one format; all formats.
3. Top 5 information priorities
- Communication failures rife
“It’s more important that the professionals change the way that they communicate and work, not the deafblind people.”
– “Talk to me, not my support worker.”
“ I didn’t understand what was being said by ……… (insert professional here, e.g. general practitioner, audiologist, ophthalmologist, optician, occupational therapist, etc.).
This type of communication was incredibly common.
- Assistive technology and home modifications – what is needed are knowledgeable experts in dual sensory impairment living realities to give advice, trials, training, support, plans and devices.
- Mental health & the grief journey – people repeated the word ‘grief’ often: “grief, grief, grief.” Or “loss, loss, loss” so many losses: It can be a rocky road when the grief of sensory losses combines with other conditions, illnesses, cancers and injuries. Some participants told of devastation and isolation when a supportive partner has gone into care or died.
- Orientation, mobility & transport – participants wanted safe streets, user-friendly public-transport apps, nicer airport staff and communication guides who act as human GPS. If you can’t get around, you are cut off from social connections.
- Peer stories & practical hacks – lived experience participants wanted proof that a good life is still possible with DSI, and to know how others make it happen day to day. One participant wrote:
“DSI is about grief, grief, grief. I have found taking up dancing and dancing lessons has made an enormous difference to my psychological wellbeing. Also, art therapy has been helpful. It’s about adjusting what you’re interested in and what you can do, to come up with something that keeps you occupied and amused.”
Let’s finish this section with three comments FROM our participants:
- On dual loss: “I went blind slowly and deaf slowly, but nobody explained that the two together would change everything.”
- On fragmented care: “Eye clinic agrees I’m blind, audiology agrees I’m deaf—yet the system treats me like two separate patients.”
- On plain English: “Give me a handbook that tells me how to keep cooking, not a PhD on retinal cells.”
Those voices frame the rest of our discussion: if the information isn’t easily available, usable and human, it simply doesn’t land.
From data to action: the Handbook
Every single lived experience respondent: one hundred per cent, said, ‘Yes please, give us a handbook that’s written with us, not about us.’
So that’s exactly what we’re building. And we’re following some non-negotiables:
- Multi-format from day one.
- Short chapters, plain English, lived experience. Think cup-of-tea length reading, not thesis length, in words you understand, with the wisdom, knowledge, and experience from those who live with DSI.
- Interactive tools to support accessibility. Checklists you can tick, QR codes that jump to Auslan or audio clips, and tactile diagrams you can feel.
- Grief gets airtime and is threaded through every topic, not a helpline tucked in an appendix.
- Lived experience voices on every page. Voices of professionals: sit alongside information and tips from people who live DSI every day.
- We aren’t forgetting the carers and families: we were told that carers need to be included in supports and information resources with connections to groups, organisations and each other
Implications for practice & policy
There’s a triple invisibility in Australia around DSI:
- No unique and distinct disability status, so shortfalls in data and a policy vacuum.
- A lack of recognition by professionals.
- Individuals and families don’t know they have a remediable condition and don’t identify as DSI or deafblind.
So, what do these findings mean for the people who run services, write policy, or see older adults in clinic? Five take-homes.
- Spot DSI early.
Build routine vision-and-hearing screening into every aged-care assessment. - Be good communicators
ASK everyone what they need for good communication and then provide that, as well as fund accessibility needs of people with DSI
- Up-skill the workforce.
Hands-on training in better communication and tactile methods. - Put lived expertise on the payroll.
Hire deafblind peer educators and advisors
- Understand and support grief journeys.
Counselling, peer groups and short-break respite should be automatic at diagnosis and each time vision or hearing takes a dip. Emotional rehab is as real as physical rehab.
To conclude:
Australians with dual sensory impairment have been telling us, loudly and clearly, that information is the first act of care.
So, let’s keep filling the gaps and joining the dots until no one asks, “Why didn’t anybody tell me this?”
THANKS TO SUSANNAH MCNALLY FOR INVALUABLE ASSISTANCE WITH THIS PRESENTATION AND POWERPOINTS
