United States of Australia

usaThis year hospitals have become my second home. In a period of 14 months I have had five lots of surgery. I first had a knee clean out. I then had my gall bladder removed, something I wrote about in Gary and Mellisa’s Excellent Adventure. Unfortunately when the gall bladder was removed two gallstones were stuck in the duct and I had to go back to surgery two days later. Then in May this year I had a spider bite and had to have surgery to cut away the infected skin. Finally, last month I had surgery on my elbow. In between all of this surgery I suffered from depression, which also necessitated a visit to hospital.

So fed up has my wife become about my love affair with hospitals that she has threatened to divorce me if I go under the knife again. It’s not looking good cos I have now injured my foot and am hobbling about. Single women out there looking for a partner that can cook, I may be on the market shortly.

But hospital visits for the deaf are no laughing matter. Three of my experiences with hospital required me to go through emergency. Now being deaf and going to hospital brings with it the inevitable communication issues. Diagnosis is critical. Diagnosis requires the patient to answer any number of questions. Get it wrong and, well the consequences are not worth thinking about.

Each time I attended emergency, even though I requested it, an interpreter was not provided. When I had my mental health episode I was treated at home. Again I requested interpreters and these were not provided. My poor deaf wife had to do the interpreting for me. It’s not a great situation.

The other times I went to hospital I did so under private health. For the first knee surgery I had an interpreter there from start to finish. This was funded under the National Auslan Booking Service (NABS). When I awoke the interpreter was smiling down at me from the bedside. It was perhaps the only time I felt truly relaxed about a hospital visit.

For my elbow surgery NABS would not provide an interpreter even though it was under private health. Why? Because I was staying overnight and they don’t fund interpreters if you stay overnight. I asked if they could just be there pre-surgery. Nope, didn’t fit the guidelines. Luckily Epworth Hospital saw fit to book an interpreter any way. But as you can see, even with private health, access to an interpreter can be a bit of a lottery.

It worries me. It worries me because not all deaf people have my language competency. Some do not speak well. Some may have literacy issues. For them an emergency visit to hospital can be fraught with danger. Misdiagnosis is a real possibility. Hospitals expect families to interpret but when you have an emotional attachment to the patient this can be highly inappropriate. Imagine having to tell your deaf dad he is going to die – it has happened. Pen and paper don’t hack it either.

Luckily for me I live in Victoria. Representing me I have Deaf Victoria. Deaf Victoria are on the ball and are currently in negotiations with the State government to trying and improve access to interpreters at hospitals throughout Victoria. This is advocacy at its best.

Deaf Victoria knew that talk is cheap. Writing endless letters to hospitals and Government Ministers often ineffective. They realised that to really make the Government and hospitals take note they needed evidence. So evidence is what they got. They consulted with the Deaf community and produced a thorough report on the issues. The report did not make for pretty reading. This report, with its recent and detailed evidence, is what they are using to negotiate improved access to interpreters at hospitals in Victoria.

Appallingly, the research found that:

“ In 62.5% of respondents, no Auslan interpreter was provided at all. In most of these cases, an adhoc way of communication was found, mainly pen and paper, guesswork, gesture, the use of family or friends and reliance on lip-reading.”

Scarily the report also found,

“One third of the sample was forced to rely on family and friends to interpret, and a large number of these family and friends were often Deaf themselves.”

Clearly the lack of access to interpreters and clear communication at hospitals is rife. Reliance on family and friends for communication support is common, even if they are deaf. It is a recipe for disaster. We can only hope that someone does not die or get severely injured before our Government and hospitals see the light.

I am so glad that Deaf Victoria are working on this one. It made me realise that a lot of issues that impact on Deaf people and people with a disability are really State based. Access to education, counselling, recreation, hospitals, mental health services and the like are all controlled by the States. We in Victoria are lucky to have Deaf Victoria funded and working for us. Not so many other States where State based advocacy remains unfunded and reliant on volunteers.

The more I think about it the more I think we should be pushing for stronger State based advocacy. A national body sounds great but the reality is that the real work needs to be done at State level. National bodies have, arguably, next to no influence on State issues. Maybe, given that Deaf Australia and Deafness Forum might be unfunded next month, we won’t have the benefit of a national body any way. Perhaps funded State advocacy groups could form an alliance to present a united front on issues that have a Federal focus?

Even with the NDIS the focus is on providing at State level. Clients accessing the NDIS need strong State and local advocacy so that the States and Local Governments make the necessary improvements to local services and infrastructure. There is no point having a well-funded package from the NDIS if none of the services and facilities are accessible. Who is doing this advocacy?

It may well be time for the States to step up. For me I am lucky to have Deaf Victoria, long may it continue.

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