NDIS – Interpreters in the Crossfire

changeLet us start this article with an apology to the interpreters of Australia. In my last article I stated that they were grumbling about the changes to their pay and conditions that have been introduced by the National Auslan Booking Service (NABS). I meant not to offend and it was a poor choice of words. They have legitimate concerns and this article will try to explain some of those concerns. In the debate as to whether NABS should be kept out of the NDIS I am keen to get accurate
e information out there. I may err and if I do please correct me.

To the CEO that wrote in taking umbrage that I had mentioned a memory of an old article that suggested that most funding for disability organisations was swallowed up in management costs, overheads and let’s add consultants … I apologise not at all.  For too long large disability agencies have had too much control as to what services and how much service a person with a disability can get. The NDIS aims to give more control over funding to the client with a disability. Have they fully achieved that yet? No, but that objective is a good thing. It is all about choice and control.

This article aims to try and explain the concerns of interpreters that have resulted from the introduction of the NDIS. The aim is to further inform the Deaf community and Deaf sector. I want the Deaf community and Deaf sector to better understand that the changes that the NDIS brings with it raise a number of challenges for the interpreter industry.

An open letter from NABS released on 27th June suggests that the decision to place medical interpreting within the NDIS rests solely with the Minister responsible. NABS also note that they have known of the transition of NABS services to the NDIS umbrella for the last three years. They claim that repeated requests to meet with the Minister concerned have been denied. NABS state that they have lobbied hard to keep NABS as it is. (Click on the blue writing for the full text of the NABS open letter.)

It is the view of NABS that they are a service similar to the Translating and Interpreting Service (TIS) that services Culturally and Linguistically Diverse Communities. (CALD) NABS feel that their service does not fit into the NDIS criteria and is more aligned with TIS services.

Despite NABS protestations the Government has clearly classified Auslan interpreting in medical situations, and indeed all situations, as a disability issue. As NABS note, the decision has been made by the Minister responsible and only the Minister can reverse the decision.

The NDIA have to work with what they are given as do the Deaf community.  NABS note that as a result of this Government decision they have received significant funding cuts. Consequently they have had to make decisions about capping services and changing how interpreters are paid. Clearly it has not been an easy road.

Indeed the capping of services is already having ramifications. A number of specialist medical services that Deaf people have previously booked interpreters for have been cut. I understand that some of these specialist services include occupational therapy, X-Rays and naturopathy to name a few. NABS indicate that interpreting funded by NDIS plans will cover the services that have been cut. While this may sound good it does not help those Deaf people who are not within an NDIS roll-out site or have chosen not to have an NDIS plan. Indeed for many the NDIS will not be a reality until 2019. These cuts have left the treatment of many Deaf people in limbo.

It would seem from the NABS letter that the Government aims to phase out NABS. While this will not occur fully until 2019 it clearly has ramifications after 2019. What this means, as alluded in the previous Rebuttal, medical interpreting for people over 65 or Deaf people not on NDIS plans is an unknown quantity after this date.

The crux of much of interpreter concerns comes down to the conditions that the NABS are imposing on them as the result of the Ministers decision. The Minister has instructed that Deaf people who receive NDIS packages must use these funds to pay for private medical interpreting.

The criteria for using NDIS funds for medical appointments is apparently the same as the current NABS model. It can’t be used for public hospitals, it must be a private medical appointment, there are conditions around how interpreters can be used for hospital stays and so on. While NABS doesn’t cover everything it provides a good service and an appropriate remuneration. This remuneration recognises the unique conditions that interpreters work under. It takes into account travel costs and time to travel so that interpreters are adequately compensated when they travel. This means they can service regional and rural areas too. This was the old NABS anyway.

The introduction of the NDIS has led to pay structure changes. The NDIS has made the decision that interpreting services can be billed at a maximum of $115 an hour. Unless an interpreter is booked direct they will not receive the full amount because agencies receive a fee to cover management and booking costs.

I understand, as the result of the introduction of the NDIS, that NABS have reduced the minimum booking from 1.5 hours to just one hour. There have been other reductions in the payment of travel time and so on.  These changes will impact on the pocket of interpreters who can least afford it. I have been informed by an interpreter that they stand to lose up to $15 600 through the changes to pay and conditions that interpreters have had imposed on them by NABS.

In the previous Rebuttal we established that Deaf people over 65s can still access NABS. We have established that Deaf people not on NDIS packages, or not in an area that the NDIS is currently rolling out, can still access NABS. In theory no Deaf person should be disadvantaged but this is far from the case.  We now know some specialist medical services where NABS previously provided interpreters have been cut. We do not know whether all people who are Deaf will be expected to have an NDIS package to access medical interpreting after 2019. We do not know the fate of access to medical interpreting for people over 65 after 2019. Very clearly the new pay structure introduced by NABS is severely disadvantaging interpreters. There is much uncertainty.

Ill try to give a few examples here of how interpreters are disadvantaged. Minimum booking time previously was 1.5 hours. What this means is that if an interpreter worked for 30 minutes they still got paid for 1.5 hours of work. Now this has been reduced to an hour. That means if an interpreter was to do four medical jobs in a day they would lose two hours of pay. Over a week that’s one full day of pay that they have lost. What this may lead to is that interpreters will simply not do medical jobs. They will do jobs that compensate them adequately like education or employment.

The reduction in the minimum booking requirement by NABS also means that if there are huge delays in seeing a doctor, as is often the case, after one hour the interpreter might simply have to go because they have another job waiting. The current 1.5 hour minimum at least provides greater flexibility. All of these changes could mean, in the long run, less interpreters for medical jobs. This has the potential to put Deaf people at risk. It is a real concern.

I understand that NABS have changed conditions in a a number of other areas such as reductions in payment for periods of waiting and the abolition of reimbursement for parking and tolls. The end result is that the interpreters income is being severely reduced. It seems that all of these changes that have been introduced were more or less imposed on interpreters with no consultation and only one week until the changes were due to start. The bottom line is that if an interpreters standard of living is impacted by reduced income they may get jobs elsewhere. This may leave fewer interpreters available to work for Deaf people.

The NDIS rolls out may mean that many interpreters may choose to go solo rather than go through an agency. They will do this because they will be able charge the full $115 an hour rather than have to be paid at the agency rate. It might seem that $115 per hour sounds a lot but interpreters work under unique conditions.

For example most interpreters are usually only able to work a maximum of 4 hours/jobs per day in the medical field because of travel time between jobs. As a result, for a full day, many interpreters really only earn $57.50 per hour. From this interpreters going solo have to cover their own insurance, administration costs, car expenses, preparation time and ongoing professional development among other things. They also must put money aside for sick days and holidays. It doesn’t leave much left over.

As was pointed out in the previous Rebuttal the Deaf person has the right to choose who they book and with whom. Deaf people on self managed packages can even book any interpreter they see fit whether or not they are registered as an NDIS provider. The only condition is that the interpreter have an ABN. As a Deaf person I like this control but interpreters are right in being concerned that this will impact on quality control and the continued skills development of interpreters.

Agencies, including NABS, provide professional development and ensure that interpreters that are allocated to jobs have the skill set to do that job (in theory anyway.) The NDIS claim that they have a rigorous process for registering as an agency or interpreter as a provider under the NDIS and they do. The NDIA also, rightly in my view, claim that the Deaf person knows who is best for them. This is why many have preferred interpreters.

But for interpreters this is a real concern because medical interpreting is a specialist field. An interpreter who is inadequately skilled could place the Deaf person at risk through interpreting medical information wrongly. Interpreters, many who have spent years and a lot of money honing their skills, are well within their rights to be concerned about this lack of quality assurance.

They are very fearful of an influx of “cowboys and cowgirls” that may see the NDIS as a means to make a quick buck. I have already seen one piece of marketing material where an interpreter has set themselves up with the line that goes something like- See me for your NDIS needs.

One must also consider that interpreting work is largely seasonal. During holiday periods there are often down times for interpreters where there are very few jobs. This means when they are in demand they must maximise their income. If interpreters are being hit in the hip pocket they will seek other employment. This will mean less interpreters  for a system that already cannot meet demand.

Changes to payment for travel time may mean interpreters are less likely to want to travel. This may mean that Deaf people in rural areas and the outer suburbs will miss out.  The reality may well be that interpreters will just decide to give medical interpreting a miss and choose the more stable jobs that provide a better income. If this happens the Deaf community may be put at risk in many medical situations. Some interpreters may simply give interpreting away altogether.

Lets look at some of the issues that the Rebuttal has established with todays article and yesterdays article.

  1. People who are Deaf and use Auslan as their primary means of communication are seen as people with a permanent and significant disability. They are eligible for NDIS services.
  2. Deaf people who are not currently on NDIS plans can continue to access NABS services as usual.
  3. Deaf people over 65 will be able to continue to access NABS services.
  4. Deaf people who decide to establish an NDIS plan must use funds for interpreting to pay for medical interpreting. If they become very sick requiring extensive treatment and more interpreting is needed then packages can be renegotiated
  5. There is a question mark as to what will happen after 2019. It seems that the aim of the Government is to phase out funding NABS completely and use only NDIS packages to fund medical interpreting. This raises questions in regard to medical interpreting for Deaf people over 65 and also Deaf people who choose not to access NDIS packages after 2019.
  6. There are flaws in the “self managed” packages in that Deaf people can basically book whoever they want and are comfortable with. Quality control and monitoring of “unqualified” interpreters will possibly become an issue.
  7. The NDIA, on their own admission, have very few case studies to go by. This means developing an appropriate assessment tool to work out how much interpreting is needed is problematic. It will take time.
  8. NABS have received significant funding cuts and have had to drastically change conditions in how they remunerate interpreters.
  9. These changes mean that interpreters will be paid significantly less. This is a concern for many of them.
  10. Changes to conditions and the NDIS pay structures MAY mean that interpreters decline to service areas where there are significant travel costs involved.
  11. Ultimately interpreters need security. If this can not be provided they are likely to choose work that remunerates them appropriately. Indeed some may actually leave the profession altogether leading even greater stress on a system that cannot meet demand.
  12. NABS and many in the Deaf sector see NABS services as the equivalent of services that are currently provided to CALD groups through TIS. Consequently NABS believe that medical interpreting should be funded separately from the NDIS. The Minister responsible clearly disagrees and sees interpreting as a disability issue and not linguistic one.
  13. New NABS rules has seen a cut to the specialist services that they will provide interpreters for. This is already raising questions as to how deaf people will continue with ongoing treatment that they may be receiving.

This is where we are at. The Minister has made a decision that is unlikely to be reversed in the short to medium term. If the Deaf community and the Deaf sector believe they are being disadvantaged they must collectively lobby and collate evidence to show that they are being disadvantaged by that decision. The NDIS is in the difficult situation that it must implement some not well thought out decisions from the Minister.

Luckily the NDIS was developed to be a flexible system and the NDIA have indicated that they want to liaise closely with the Deaf community to attempt to address any concerns. Whether this will be enough in the long run is anyone’s guess. All we can do is to continue to inform ourselves and make an honest attempt to find solutions before rejecting the NDIS as am alternative for medical appointments outright.

That said there is likely to be a great deal of pain and anguish in the meantime before consensus can be reached.

 

*** Note that even under the NDIS there are still limits to accessing the hospital system, particularly public and emergency situations that are not covered. The long hard road for advocacy in this area has to continue.

*** This article was developed with assistance from professional interpreters impacted by the changes documented.

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The NDIS Facts – NABS and the NDIS

signThe National Disability Insurance Scheme (NDIS) commenced in 2013. For the disability community it was a Godsend. For years disability funding had been controlled by large organisations. Much of the funding was eaten up in overheads and exorbitant management salaries. I remember reading somewhere that as much as 75% of funding was eaten up in overheads and management fees leaving only 25% to deliver actual services.

I am a great supporter of the NDIS. However, even I know that there are teething problems. It is a huge change and the NDIS is not yet running in a way that delivers fair and equitable outcomes for everyone. We have to be patient and allow the NDIS to develop and grow. It is a huge change and a new model. Mistakes will be made. That said, I firmly believe that in time, with the benefit of experience, the NDIS will get it right. But there will be pain before the gain.

Because of this we need to be careful not to knock the NDIS down before it has had a chance to deliver. There are many in the sector who would like nothing more than for the NDIS to fall over. If this were to happen it would be a disaster. We have to give the system a chance to develop and reach its optimal potential.

Recently there has been some uproar within the Deaf community about the NDIS. This has been in relation to the decision to place the National Auslan Booking Service (NABS) under the NDIS pool of funds. For those that do not know, NABS is the service that provides free interpreting for Deaf people who use Auslan to attend private medical appointments.

Deaf Australia have asked Deaf people to sign a petition to keep NABS separate from the NDIS. For better or for worse I think that ship has already sailed. The decision has been made and it wont be reversed any time soon. However, lets not panic. There may be some benefits in having some of NABS services delivered through the NDIS.

There is a lot of misinformation going about. For example people are saying that Deaf people who use Auslan for private medical appointments and who do not qualify for the NDIS will get nothing. Others claim that Deaf people over 65, none of who can get NDIS packages, wont be able to get interpreters for medical appointments any more. Others claim that interpreting under the NDIS will be a disaster because any Tom, Dick or Harriet will be able to set up an ABN and work as an interpreter even if they are not fully qualified.

Some of these fears are valid and some less so. To try and clear the air I met with the head office that runs the NDIS that is called the National Disability Insurance Agency (NDIA)  I asked them a number of questions ranging from eligibility, access for over 65s right through to quality assurance. The answers provided below have been fully endorsed by the NDIA.

Who is eligible for NDIS Services? – Firstly, let us be clear. Every person that is Deaf and whose primary method of communication is Auslan is eligible. AND I MEAN EVRY PERSON! Now there may be some people with relatively mild hearing losses who will not qualify but a Deaf person who uses and requires Auslan to communicate in everyday life will qualify. Furthermore Auslan interpreters are seen as a necessary support and will be provided!

There may be some cases where less experienced NDIS planners will make an assessment where they believe a Deaf person can hear enough and therefore not require an Auslan interpreter. I have some concerns that this may happen. It is a case of watch this space.

(People who are hard of hearing, who do not sign may also qualify for captioning or communication assistance, this area needs to be tested. I did not ask about this group)

How do we work out a reasonable amount of interpreting that is required?  – The NDIS admitted that this will be a steep learning curve and errors will be made along the way. The problem is that Deaf people make up less than 2% of all people that are accessing the NDIS. However, it should be noted that NDIS packages are not set in stone and can be renegotiated if need be. So if a person gets sick and finds that the amount of interpreting is inadequate and they require more they can approach the NDIA to negotiate more. If they are too sick to do this they can nominate someone to negotiate on their behalf. This is a relatively new area for the NDIA and patience will be needed as they learn and try to develop an appropriate formula to calculate interpreting requirements.

What medical appointments can I use NDIS packages for? – Criteria for using medical funds for interpreting is exactly the same as NABS. They can be used for private medical appointments. There are some restrictions as is the case with the current NABS model. For example, despite what I originally thought, NDIS funds cannot be used for emergency situations at either private or public hospitals. Interpreting in these situations is seen as the responsibility of the hospitals concerned. It is for the Deaf person to be aware of what the criteria are. (Sadly the lobby for full communication access in hospitals will have to continue!)

Who can I use as an interpreter for medical appointments? – The real answer to this is – any one you want. You can book an interpreter through any agency you see fit, even if it is not NABS. You can even book any individual you like if  they have an ABN. The NDIA are at pains to point out that they have a rigorous process of registering as a supplier where agencies and individuals must show and document their qualifications and relevant experience.

BUT the Deaf person can, if they so choose, just book any interpreter who has an ABN. This last bit has people up in arms because they fear an influx of unqualified interpreters to the sector. In the words of the NDIA – “If a participant decides to self manage, they can engage anyone they wish. You would expect people who can choose who they engage will know who is good and who isn’t so good.”  I can only suggest that if this is something that concerns you or the Deaf sector that you work closely with the NDIA to raise your concerns.

What if I don’t want an NDIS package, can I still access NABS? – It is entirely up to the individual if they want to sign up for an NDIS package. The NDIS want to see Deaf people signing up for NDIS packages because these packages can offer more than just Auslan interpreting. For example individuals can purchase assistive technology or even upgrade hearing aids. However, beware that their are price guidelines for purchasing hearing aids and they may not cover the total cost of any aid that a person wants. There may be out of pocket expenses.

As of now, any person who chooses not to access  the NDIS, or is not in a region that the NDIS is currently rolligng out, can continue to access NABS as per normal. There will be no change immediately. HOWEVER, be aware that this may change after 2019 when the NDIS is fully rolled out. Remain diligent and raise any concerns with the NDIA. The NDIA are keen to work closely with the community to identify potential problems and solutions.

Also be aware that if an individual chooses to use an NDIS package then they must use these funds for private medical appointments. You will not be eligible for NABS services as they are currently offered. However, use of NDIS funds for private medical appointments must still meet the criteria currently established under NABS, but there will be limits. It will not change greatly except that Deaf individuals will be responsible for booking the interpreter. They will also have to decide whether to book an interpreter direct or go through an agency.

What if I am over 65 and can’t get an NDIS package? – All Deaf people over 65 can still access NABS as per normal.  Word from the NDIA is that after 2019 – ” As I understand they will continue to access the NABS program.”  I suggest that the Deaf sector need to remain diligent between now and 2019 to ensure that this remains the  case.

It is also worth noting that if any individual that receives an NDIS package before they turn 65 can continue to use this package or they can choose to receive support under programs that are provided for aging Australians.

What are the additional benefits of an NDIS package that includes Auslan interpreting? – The current aim of NDIS packages that include Auslan interpreting is to enhance inclusion. There is a great deal of flexibility for an individual to use their package. For example an individual may want to access a local yoga class. They can book interpreters for that. Or a group of Deaf people may want a personal trainer. They can pool funds to cover interpreting costs. Although they must pay for the personal trainer out of their own pocket obviously. There have been circumstances where individuals have used their packages to book interpreters to communicate with trades people in negotiating and carrying out home renovations. For parties, weddings and funerals the lack of an interpreter could be a thing of the past.

Whether or not the NDIS will think it’s acceptable to book interpreters for an appointment with a bank manager or a lawyer remains to be seen. They may see this as the responsibility of the bank or legal firm. Individuals will need to be clear on what is possible and what is not.

All of the answers to questions I have put together in this article and have been approved by the NDIA. I hope that in this way individuals can make an informed choice as to whether the NDIS will leave them better or worse off than the current system.

There are still issues we need to discuss such as ensuring the use of qualified interpreters so Deaf people are not put at risk. Agencies may also struggle as the going rate of $115 an hour is much less than they are charging now. The profit margins of agencies will take a hit in some areas. Already interpreters are expressing grave concerns about changes to the NABS pay structure.

As with any change there are positives and negatives. I urge everyone to find out all the information that they can before they reject the NDIS for medical interpreting outright.

I hope that readers find this information useful.

 

Between Two Worlds


tornThis morning I had a funny reminder of just how much information we Deafies miss out on when we integrate with the hearing world. I received a text from my wife, who is also deaf, telling me that we had won the tennis grand final the previous Monday. It is now Sunday and we had been crowned tennis champions for a week and we were blissfully unaware. I had received a text from the organizer congratulating me on our win. I had found this odd, because we rarely lose. As it turns out she was congratulating me on our grand final win and I had no idea.

I am sure our hearing colleagues who make up our team were chatting about the fact that it was a grand final. Not being able to overhear them meant my wife and I had no idea. Most likely they had congratulated us at the net, but my wife and I didn’t hear this either. So we finished the game and headed home. Where we live its freaking cold at night so I wasn’t hanging about. This little story is stark reminder of just how much information deaf people miss out on when they interact in the hearing world.

Hearing and deaf interactions came very much to the forefront recently when a young deaf woman contacted me. Her name is Sian and she is an interior designer. She was seeking advice as to how she might advance further in her career. As it turned out Sian was born into a hearing family and had been the youngest person ever to receive an implant back in 1990. She was just two and a half years old at the time. Four months after her surgery the implantation of young babies was approved by the US Food and Drug Administration. At 19 Sian had a second implant. Deaf babies now have bilateral implants, this was not an option back in 1990.

I will come back to Sian and her original reason for contacting me later. After I met Sian I asked if I could interview her for The Rebuttal. I sent her a list of written questions, which she answered for me. She also asked her mother for her views on some of the questions.

One of the questions that I asked was about the impact at the time she had her implant. Because she was a world first I wondered how people had reacted. Her mother had this to say,

 “Not long after Sian had the cochlear implant, we went to a camp for families with deaf children. Sian’s head was half shaved from the surgery with a massive scar, we wanted to connect with other deaf families but at this event we physically experienced the Deaf community turning their backs on us. This was one of our family’s first experience encountering the Deaf community. Sian was only 3 years old. We wanted to get an understanding of the Deaf community and what it would mean for her. Unfortunately this turned out to be a really negative experience. This was in the early 1990’s. This set the stage of our family not feeling welcomed by the community.”

I well recall this time. In the early days of the Implant some of the more militant factions of the Deaf community reacted savagely to any suggestion that deaf babies should be implanted. They called it child abuse. They screamed that parents were disfiguring babies. They screamed that parents were putting young deaf babies at risk. I vividly recall a prominent member of the Deaf community going on the Today Show to tell the world that cochlear implants had led to paralysis. (It as an over reaction to the fact that a few deaf people had suffered from facial paralysis as a result of the surgeon nicking a crucial nerve during surgery.)

It must have been a horrible time to be a hearing parent of a deaf child and trying to decide whether to implant your deaf child or not. Sadly, because Sian had been the first, her parents seem to have received the brunt of this negative reaction. As a member of the Deaf community I can only apologise profusely to Sian’s mother. I cannot imagine the pain it must have caused. Suffice to say that it was not until Sian was 14 and began to be involved with the Deaf community that the Deaf community began to accept her family.

When Sian contacted me she wanted advice as to how she could progress at work. She is very intelligent. Her spoken language is fantastic. Her written language is superb. She clearly has much to offer but for some reason she had not progressed as much as she wanted to at work. She had  basically been in the same role in all that time. She was not where she wanted to be in terms of her position and skills. She wanted to gain more in her position.  She recounted all of this to me, in tears and clearly very frustrated.

One day I went into my manager’s office and sat down, I told him I was frustrated at where I was and that I was not where I wanted to be. I was in tears, to the point of crying uncontrollably. I told him I wanted more, I compared myself to people I went to university with that have flourished in the industry that are doing extremely well for themselves, in magazine spreads, owning their own business etc; that I was no where near that. I aspire to be like my colleagues, I want to develop my skills and knowledge further, I want more exposure in the industry. I laid all my emotions on the table and my manager took this on board. To his credit, he has been wonderful. Since then, I have been given more than I ever had in the last couple of years, I am being taken seriously and continuously supported to help me to get to where I strive to be.”

Despite her ability to hear well, speak well, write well and do her job competently she had many frustrations working in a hearing organisation. For example she works in an open office that is partitioned off. She hates this because she cannot see any one. She does not know what others are talking about. She does not have access to peer learning nor the ability to be involved n the discussions that her colleagues are having. This is something that many hearing people do not get, particularly in a workplace. One of the ways that people get ahead in their career is simply by listening to what others have to say. In this way they contribute their own ideas and become involved in the DNA of an organization. If they cannot, they are often seen as being the quiet person, content in what they are doing.

The sad thing is that because not much thought is given to how to properly include a deaf person in these “Office Discussions” employers miss-out on the true value of a deaf employee. And as we can see with Sian it can hold back the deaf employee to the point of frustration. Said Sian,

Because I can speak and hear well, my colleagues tend to forget at times that I don’t always hear absolutely everything. The little subtle things can be a huge effort: phone calls; the intense concentration of listening/lip reading; the strain to hear talking across the office; I am proudly continually educating them about deafness and of my needs. Even having to make or receive phone calls have been a challenge, there are people that I can have a comfortable conversation with on the phone, but there are others that I cannot understand a word because of their gruffness in their voice or accents, or speaking too quickly or in particular background noise. I find knowing the context and knowing the voice helps to predict the conversation. I panic when the phone rings at work, I have all these thoughts running through my mind – who is it? What’s the context? What if I cant hear them how do I get out of it?”

 There is always the constant that the deaf employee must re-educate their colleagues as to their needs. Often hearing colleagues are very accommodating but when things get really busy they forget. We deafies constantly have to remind our hearing colleagues of our needs. It can be very tiresome and there are times we just do not have the energy to continuously remind people. Sian has these frustrations too,

“I also get extremely frustrated that I miss out on a lot of information that can float throughout the office, it could be a construction issue or issues with the builder, or any crucial information that would be valuable for my personal development as a designer. The only way I process information is by being told directly or visually.”

And we develop our own strategies too. Sian has some. We all know that the world is designed for hearing people. It often does not stop to consider the needs of Deafies (or any people with a disability) So what happens is we adjust. In Sian’s own words,

“But of late I have come up with a strategy – leave answering machine on so I can listen to the message to know who it is and what they want, I will then figure out if I am able to ring them back or simply email. This is something that I will be raising in my staff review soon. But if its colleagues interstate, I make the effort of telling them to communicate with me via Skype or email. I find this really useful.”

What Sian has described, I call Deaf Life Skills. We really need to teach them to our deaf kids.

In many ways Sian is fortunate because her employer is very responsive to her needs when she raises them. Sian explains,

“I made a point in a meeting that the office layout needed to be changed especially removing the partitions between desks so that I could have a clear view of people around the office so I could try and see conversations (where appropriate). My colleagues support this, it made complete sense to them and that they had not realised that this was a barrier for me. Despite my frustrations at work, any issue that I raise as a result of my deafness is taken seriously and acted upon. At present I am working on developing confidence around my self advocacy skills.”

 Even so, challenges remain for Sian despite the fact that she gets great benefit from her implants. I winced when she explained that she sits in meetings of up to twenty people. She copes by focusing on the people that talk the most but obviously misses out on much information. I was able to give Sian some advice on strategies to deal with such meetings that she is now following up. That is the value of having a good deaf professional network.

“I got some sound amplication devices that are supposed to be of help with certain situations at work but they were such a pain in the arse to get it working; I would have to stop, make all these switches to tune in – for an example if the phone rang, I would have to had to turn on my loop, press a button on my processor to tune into the phone – it was difficult to do this in a number of seconds the phone rings, it got stressful and frustrating. It also meant that it cut out background noise so I could only hear the person on the phone but I could not hear myself responding back, I would speak so loudly’ with colleagues around. There was another device that I got to help with meetings, it would pick up the person speaking and cut out background noise. But I found this not to be as good as it could have been. It would take ages for it to tune in and if I was to respond, I couldn’t hear myself or control my tone. It also didn’t necessarily pick up other people making comments in a meeting, I still missed out of information. These devices made it a hell lot more awkward for me. However I was luckily enough to get some other devices through a different brand which work a lot better, but the thing is I have to remember to make good use of them. Through out my hectic day, I have to remember that I have these devices that I can use that would help – but who thinks to drop everything in order to make things better for ourselves. It is an effort.”

I asked Sian about some of her experiences growing up. She was educated within a Deaf unit. During her primary and secondary education she generally received good support. She recalls her time at primary school as being very happy. She felt accepted by her friends and she felt just like any other student. Things changed when she attended secondary school. Secondary school brought with it a very different set of challenges. This is how Sian describes this time,

“Secondary school was more challenging. The hearing kids were older and came from different primary schools – mostly from schools that did not have a deaf campus so they would not have the understanding of deafness that the kids I went to school with had. I struggled with my identity, bullying and pressures to be ‘accepted’ “

Sian feels that she was lucky to be part of a Deaf Facility during this time. She saw the Deaf facility as her ‘safe haven’ . The deaf students of the deaf facility are friends right up to this day. But even so there were many things that frustrated her,

“Sitting in groups trying to follow the conversations; having to sit at the front of the class room to ensure that I don’t miss any information. I was encouraged to wear an ‘RF’ transmitter which I gave up in year 8 much to my teachers and parents annoyance (in hindsight would have made a difference). Being a teenager I didn’t want to be any more isolated than I already was, it was a struggle enough as it was.”

Sian has battled with depression throughout her teenage and adulthood life. Much of this related to the struggles and frustrations she faced being deaf. Some of her depression was related to personal issues that she doe not wish to raise here.

“Growing up I have always felt a bit isolated in the hearing world trying to fit in and with my on going frustrations, but then I discovered a whole other world – my identity went into overdrive. I am deaf but I am oral but was learning Auslan. Who am I? Which group do I belong to? The Hearing? The Deaf? The Oral? The Signing? In my twenties, I have come to realise that my world is a whole lot richer that I have access to all these groups. I don’t need to belong to just one group. I can move across these groups fluidly. Having said this, I embrace my deafness, this is who I am. Acceptance has been a long journey but I finally have arrived! My teenage years and early adulthood I suffered chronic severe depression, I was very unwell that I had to retreat to focus on getting myself well again.”

Sian’s experience of deafness and interacting with the hearing world is something many deaf people can relate to. It is not a world that is designed for deaf people, even with the most advanced technology. Sometimes I think we are often set up to fail. If we talk well, hear well and appear to be doing great at school, this is often seen as enough. The internal and external struggles that Sian describes are not something hearing people understand well. Her time at university will resonate with many deaf academics,

I had thought that University would have been a phenomenal experience and I had also expected to make some good solid friendships through out my degree. But it was nowhere near that. My peers were from all walks of life with, I am assuming, not much understanding of deafness. It appeared that they seemed hesitant to approach me because I had a notetaker on my arse, the other students may have not have understood the dynamics between the notetaker and me. They may have also not have understood why I had a note taker if I could hear and speak so well. When it came presentation time, I was worried maybe I would be presenting something completely different to the rest of the class. If I can’t hear or the strain to hear is too much of an effort, I zone out. It is exhausting. I tried my best to be like my peers. To say it was a challenge is an understatement. I wish there was live captioning when I was at university, this would have made a world’s difference to me.”

I asked Sian whether having a cochlear implant meant that many people often had unrealistic expectations of what she could hear and do. Her answer was revealing,

“We need to continually educate the hearing world that just because we have cochlear implants it does not mean that we have 100% hearing, that we are still deaf and we still require support and assistance.”

And we need to educate the Deaf world too. I am still cringing at the backlash that Sian’s parents must have received when they made the very difficult decision to implant her. There are still these elements of the Deaf community that aggressively slam parents of deaf children and the hearing world for pushing cochlear implants. Don’t get me wrong; I also get frustrated with a system that constantly peddles biased information. Even so hearing parents of deaf children are often unfairly targeted and this causes them great pain. Not only does it cause them pain put it also leads to them withdrawing and even shunning the Deaf community. This means that their deaf kids miss out on so many wonderful social opportunities. As I bring this article to a close I ask all my deaf readers to carefully consider this last statement from Sian’s mother,

 I wish now that Sian had contact with the deaf signing community earlier on and that Sian was accepted by them. Being marginalized by the signing community I think caused many problems. It created a situation of us and them. Unfortunately this meant that she was not able to experience being a member of the deaf community until she was about 14 when she became involved in the Deaf community and learned to sign. It was clear that it was what she needed because she flourished in this environment. I wished back then that the Deaf community embraced all people who were deaf or hard of hearing, those who spoke or signed. Considering what we know about the brain’s plasticity now, I may have looked at Sian’s communication needs differently. I may have considered using Australian sign language before Sian learned to speak. But I would definitely have continued with our oral crusade.”

 Food for thought?

Thank you Sian and her mum. It has been a privilege to write your story.