Arms raised aloft, bent at the elbow, the women in the front row twist their hands quickly in near unison, as if screwing in a lightbulb, while the rest of the crowd clap the speaker.
One of the women gets up to speak, through her Auslan interpreter. She turns to the crowd. She will face them she says, so any deaf people in attendance can understand as she signs. She is, after all, speaking on their behalf.
This scene is being played out at Bankstown Sports Club at the first community forum of the aged care royal commission back in March.
The speaker tells the crowd there are no provisions for Auslan services in the system currently, something she has lobbied (then minister) Ken Wyatt for 18 months she says.
Another deaf woman spoke of the risks the deaf face when signing paperwork in aged care. There is often confusion over what they are signing, and the deaf are sometimes duped into signing things against their own interests, she says.
End of life plans are also a problem for the deaf, and what’s more, the deaf who don’t have English as a first language are even more at risk. Many older deaf Australians may have little understanding of written English.
Deaf Australia chief executive Kyle Miers believes that access to communication is a pressing issue for the deaf in aged care.
“Most of the time, the staff and facilities do not accommodate their communication needs which often leaves them more isolated than the rest of the population,” he said.
“When they are isolated, there are many things that can come through this – physical abuse, verbal abuse, emotional abuse and so on – because a deaf person is unable to communicate their issue across to anyone, let alone the providers’ refusal to provide sign language interpreter.”
For Miers, family members need to play a key role in helping their loved ones communicate, as he has seen cases where the abuse starts at home with some children of the deaf making decisions without their parent’s consent.
“These children are non-deaf and have little or no appreciation of their parent’s daily struggles. Some of them may consider placing their parents away from accommodation that has deaf people, further isolating them from the world,” he said.
Leonie Jackson, CEO of the Deaf Society, agrees that this is indeed an issue, the roots of which can be found in the structural barriers that the deaf face when approaching aged care.
“It goes back to the [deaf] parents not understanding their rights … not understanding written documentation. You want to trust your children, especially if the children are adults. And it’s putting them in a very vulnerable and sticky situation,” she says.
Jackson argues that government departments need to be more flexible in their approach to deaf people, she points to rules around NDIS funding as one area for reform and the simple act of applying for aged care packages.
“Deaf people were saying, ‘When I applied, later on I’d get a letter. And it says that your application is being closed because we didn’t answer the phone call.’
“Part of their process is to call the participant. Deaf people can’t answer that phone call. So, then their application was being closed. They say they will try to contact you three times by phone. If you don’t respond, you have to apply again.
“It’s not adjusted to meet the needs of the deaf community. When I posed that question to the Department of Social Services, they said, ‘Well this is our process. And we can’t change it.’”
For the deaf Aussies who do make it to aged care communication can be very difficult and the health ramifications of the isolation they experience can be dire.
Academic Louisa Willoughby worries about the deaf person in aged care with no family and no access to sign language whatsoever.
“People definitely do try and cluster as much as can be practical, but often, particularly in rural and regional Australia, people just end up being the sole person there and not able to really communicate with anyone,” she said.
Living in the too hard basket
Fast forward to October and the Melbourne hearing of the royal commission. Profoundly deaf woman Elizabeth Karn takes the stand to tell the nation not to forget the deaf.
“I feel the government has taken away the basic human right for deaf elders over the age of 65, and that is our right to communicate using an Auslan interpreter,” she said.
She told the commission that she and her husband Walter, who is also deaf, are both over 65 and are therefore too old for the NDIS which makes accessing funds difficult.
The Karns are part of the Australian Deaf Elders, a community advocacy group of people who share similar fears.
“They’ve faced barriers most of their lives,” Tina Stuart tells Aged Care Insite. Tina is the Karns’ daughter and translates for the group. The gap between NDIS and My Aged Care is the big issue for the group who are all over 65, apart from member Laurel Payne.
“Laurel says ‘I feel really guilty that I have NDIS’, and she is able to support her husband with NDIS funding. But she is feeling very guilty that the others are missing out,” Tina says.
NDIS funding is most important for the simple day-to-day tasks we all take for granted, the group say. Hiring their own interpreters to come with them to the doctors or to legal meetings can set them back $240 for two hours, and that’s when they can manage to find an interpreter. There are some government funded services for interpreters for the deaf, but these only cover medical trips.
“In the past, Laurel says that she went to her superannuation fund and she needed to talk about her finances. And the business said, ‘I’m really sorry but we can’t provide an interpreter for you, that’s something you would have to pay as an out of pocket expense,” Tina says. Now that Laurel has the NDIS she says she can better understand her super and her and husband Steven (who is over 65 years old) now know what to do with their retirement money.
The lack of access to interpreters is part of a larger issue. The group have felt discriminated against their whole lives. Without interpreters the deaf often have to rely on pen and paper which, for someone who has Auslan as their first language, is problematic.
“Auslan has limited vocab. The gestures, the words are very different to a hearing person. To write with pen and paper is really difficult to get the message across,” Elizabeth says.
Group member Barry Moore says that with pen and paper he might try to communicate with someone and write a paragraph only to receive a two-word answer. “How do I understand these two words? With an interpreter life would be easier,” he says.
One thing which is particularly “distressing” for the group, is the lack of help from My Aged Care. The website lists 22 languages which can be interpreted, but no Auslan interpreters are ofered.
“Mum says, I’m just dumbfounded. Why don’t they recognise Australian deaf people, why aren’t they included? NDIS have told these people over 65 ‘no you are not eligible, you have to go through My Aged Care’. We approached My Aged Care and asked what services they have for deaf elders and they said, ‘ah we really don’t have anything’,” Tina says.
Jennifer Moore says she is frustrated as she struggles to afford an interpreter on retirement money and a pension, and wants to join an exercise group and live her life to the full. She feels that she is “missing out” and she and husband Barry are quite lonely.
“Jennifer says this really affects their quality of life. To live a full life of what life they have left, and to have the opportunity to fully communicate with everyone, is so important to them, to anybody … It’s affecting their mental health,” Tina says.
I ask the group how they feel about the possibility of one day entering residential aged care.
“They are extremely worried,” Tina says, before quickly following up with, “Me personally, I wouldn’t have my mum or dad in an aged care home”.
“Jennifer was saying that Elizabeth is lucky to have me,” Tina says. “She says, I’m a little bit unlucky as my family are not available all the time, I’m missing out even more.”
As a CODA (Child of Deaf Adult) Tina is also affected by the lack of help her mother and father receive. She takes one day off from work each week and travels a three-hour round trip to help her parents.
“Mum says that sometimes she doesn’t want to ask me to come up during the week to interpret, she feels guilty. I don’t want her to feel guilty, I want her to ask me. I’m happy to help,” she says.
“I’m basically sacrificing a day’s pay to help them… I feel angry that the government is not supporting deaf elders over 65. It’s time away from my family. I still have a young child at home and other responsibilities and it’s a three-hour return trip for me.”
Long road to change
The group has mixed feelings about the aged care royal commission. They also have mixed feelings about some of the deaf advocacy groups. They take issue with the characterisation of CODAs and tell me that, instead, we should focus on what CODAs have to go through due to a lack of funding for these groups from the government.
The group tell me that they had no help from any group or society when approaching the royal commission: no help with the letters, transcribing, making submissions or indeed interpreters. They are unpaid volunteers and dedicate large portions of their time to these issues. Interactions with politicians in the past have left them cold and they feel like the lone voice advocating for deaf elders in this country.
It turns out that the women who spoke that day in Bankstown were members of the group and they believe that if it wasn’t for that day – or Elizabeth speaking at a similar forum in Wollongong – their plight would not have come to light.
They think it will be a long road to change and hope the government doesn’t put these issues in “the too hard basket”, but they are happy that their voices have finally been heard.
Tina describes the day her mother spoke to the royal commission. As her mother prepared to give her statement through an interpreter her voice could be heard through a nearby microphone. An interpreter wanted to turn the mic away so as not to pick up the noise.
“I said hang on. This is mum’s opportunity to stand and have her say to the royal commission and I think mum needs to be her true self … I want them to see the struggle of how they express themselves through their language, through their voice. And it is really difficult for a hearing person to understand a deaf person if they are trying to use their voice,” she says.
Elizabeth signs to Tina: “I’m doing this for my people in my community, it’s not just for me and my husband, I’m fighting for all Australian deaf elders.”Do you have an idea for a story?
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