Infantalising the Deaf Community

The recent Rebuttal, What About Me, has caused some controversy. The article aimed to highlight some of the reasons that the Deaf community were frustrated with the media portrayals of Auslan. Many could relate to the article while many others saw the article as an attack on interpreters and the Deaf community establishment. It was neither of these things. So I thought to expand a little more on the themes in this article.

In recent times when interpreters have become prominent on the television, for whatever reason, the interpreter becomes a bit of a celebrity. During the Queensland floods the interpreter became Sign Man. The hearing populace had enormous fun taking the piss at what they saw his exaggerated facial expressions and movements. During the Bushfires the bearded fellow, who we all love, was everywhere. In Perth, the interpreter became the centre of everything. Interpreting for Fat Cat and teaching the Premier of Western Australia some impromptu Easter signs. It was a bit cringeworthy watching the Premier hop around like a bunny. The intent, however, was pure. Pity the poor interpreter who was forced to comply. She could not very well refuse with all eyes upon her.

Let’s be clear, I and the Deaf community, do not begrudge the interpreters the exposure they’re getting. They are a valuable resource and much needed by the Deaf and hearing communities alike. As many have pointed out, many of these interpreters have been part of the Deaf community all of their lives. Many have invested a great deal of time and money to become the very best interpreter that they can be. Studying to be an interpreter is not cheap.

We are all very aware of these things and are thankful that interpreters are there. They are the bridge between hearing and the Deaf communities. Interpreters ensure inclusion and equality. They ensure, and this is not said enough, that Australia can get the benefit of the many Deaf people who have skills and attributes to benefit Australia.

In years gone by Deaf people were encouraged to do trades or simple clerical jobs. They were not encouraged to become professionals. I became a cane furniture worker and a cabinet maker before I set on the path to become a teacher, which later changed to becoming a social worker. I wasn’t encouraged to consider anything beyond manual trades. Communication was thought to be too hard. Not being able too talk on the phone meant it was impossible, apparently, to be employed in professional areas.

That attitude was wrong then, and it is wrong now. Even more so today when there is a plethora of technology. If we really wanted, we probably would never have make another voice call ever again. Email, live text chat, messenger, Teams, Zoom, SMS etc arguably are all that we need. For example, the last three cars that I have bought were arranged entirely online. No phone calls required. I’ve just arranged a move to Adelaide entirely by email and online purchasing. Not one phone call was needed. I know this horrifies hearing people, not talking, but it’s possible.

But I digress; my point is that we have an enormous range of Deaf talent out there. Lawyers, social workers, bankers, nurses, doctors, mechanics, teachers, scientist, artist and so on and so on. Arguably, without interpreters Australia, indeed the world, would not receive the benefit of these talented people. Interpreters are there for Deaf and hearing alike. They bridge the gap, ensure inclusion and ensure the hearing world does not miss out on all of the diverse talent and skills that exist among Deaf people.

That said, interpreters are not heroes. Nor, I am sure, do they want to be. We would not all fall over without them. We would find a way to communicate. The relationship between interpreters and the users (Deaf and hearing) is reciprocal. In this sense, each person in the relationship is there for a reason.

In simple cold and hard business terms, without the deaf and hearing people in need of the interpreter, the interpreters would not have a job. They have a profession that provides them with an income, status and a means to pay their bills because there is a demand for it. I know interpreters are not just in it for the money, but let us be honest, if it didn’t pay, we would have fewer interpreters around.

It’s a not a job for kind hearted volunteers either. There are issues of life and death that interpreters deal with everyday. Issues of money. Issues of the legal system. Issues around personal relationships and so on. We need skilled and committed interpreters. That’s why we pay them good money, they do a tough and vital job. Sure, many do pro-bono work and that’s great. But the job that they do is intense and requires great skill. It is also very stressful, I do not envy them. Nor do I protest at them being paid a fair wage in line with their skills, it’s a vitally important job. I have no time for people who say that interpreters are paid too much, that is poppycock.

That’s why both Deaf and hearing people need interpreters. Doctors need interpreters so that Deaf people follow their advice and prescriptions properly and do not overdose. Banks need interpreters so that Deaf people understand their contracts. Counsellors need interpreters so that marriages are maintained and mental health services provided. Employers need interpreters so that they get the very best out of their Deaf employees and visa versa.

Deaf people need interpreters so that they are employed and can do a diverse range of jobs. Deaf people need interpreters so that they can be included and valued members of the wider community. It is a reciprocal and serious relationship that the three stakeholders have with each other. Reciprocal and equal.

The Deaf community want to be that equal partner in the relationship. They don’t want to just be seen as the helped. Deaf community members want to be seen and valued and not seen as those poor people that need to be saved by those super interpreters. They want to be taken seriously as individuals, contributors and professionals. This is why there are frustrated. ( I do not believe that there is one interpreter that sees themselves as a super interpreter. I speak here only of the themes portrayed through the media. This is not something that they have much control over.)

Arguably, the Deaf community are also being infantilised. Sure, I get it that there are Deaf kids that will love to see interpreters hopping around like bunnies, but when this is largely all that is portrayed on the mainstream media, along with the theme of being helped, the wider deaf community feel devalued, belittled and even further marginalised.

This is further compounded by the fact that there is always the AWWWWWW factor in play. It’s great that Emma, the yellow Wiggle, incorporates Auslan into her performances. But I can tell you my hearing colleagues, as one almost, say to me, ” …Isn’t that beautiful ..” They come and get me and they say “Gaz, have you seen this!! – It’s beautiful.” It’s either that or they ask me the signs for swear words.

When the Deaf community see hearing people speaking for them and owning their language, without much acknowledgement the Deaf community, they feel invisible. The ones protesting about the media portrayal of interpreters and the widespread attention given to people like Emma, the yellow Wiggle, just want to be taken seriously. They want Auslan to be taken seriously and to retain a semblance of ownership of Auslan. ( It is true, no-one really owns a language, but when Auslan is constantly infantilised and seen as a tool of help and not identity, it hurts.)

That is what the protest is about. It is really hard to speak up without being seen as taking potshots at interpreters. It is really hard to speak up without being seen as miserable bugger for protesting about Emma and her use of Auslan. But, there are some brave souls that have chosen to do so.

For their trouble many of them are being told to shut up. They are being told to stop being negative and to be more positive. Well, when you are marginalised and made invisible by well meaning media who portray you as needing help or when you have your language infantilised by well meaning hearing people who think they are doing you a favour, its a bit hard to be positive sometimes.

All these Deaf community members want is to be seen as equal and to be taken seriously. They also want Auslan to be taken seriously and not solely seen as a means of entertaining the hearing world. That isn’t too much to ask, is it?

What About Me!??

Gavin Balharie was interviewed by the Guardian in a brilliant piece that highlighted why Deaf people needed to be remembered in times of crisis. He told the story about being on holiday with his Deaf wife and young hearing daughter.  When the bushfires began to approach they had no idea what to do. He and his family didn’t know whether to stay or go. They could see and smell the fires but had no idea as to just how severe or dangerous that they were. Balharie became desperate and, “…recorded the local broadcast on his phone and managed to find a translator to send it to. When they got the video back 30 minutes later, they knew straight away they had to get out of there.”  It was only when he received the information in Auslan that he realised that kind of danger that they were in.

I believe that Gavin and his family eventually got back to Victoria safely, basically driving the opposite direction of the fires and coming home via Canberra. I could be wrong but the point is, but for his interpreter friend who provided a video transcript in Auslan of the recording, Gavin and his family would not have known what to do. They would have been in greater danger than they actually were.

If you are hearing you have any number of outlets to receive information. The car radio is one. Social media is another. You may be in the pub when the news comes on and you would hear it there. Shopping centres have televisions on as well. What this means is that a hearing person would be hard pressed to miss vital information. Not so if you are deaf.

This is part of the reason why members of the Deaf community, just your basic grassroots members mind you, set up the Facebook Page, Auslan Media Access. This was basically a page that aimed to highlight where announcements were not accessible. Members of the page would post on Facebook any announcements about the fires that were on television or social media. They would highlight where Auslan interpreters or captioning were not provided. They even made an impromptu video, Can You See the Interpreter, which you can see below.

Members of the Auslan Media Access page posted in droves. People emailed television stations and their government representatives. Slowly but surely interpreters began to appear on screen regularly. Sometimes they would be there but the camera man would not frame them in. In a relatively short space of time the media and governments got the message and interpreters became part of every Australians life for critical and important announcements. First for the bushfires and then for the COVID-19 situation.

It was a momentous achievement. It was achieved through skilful campaigning and very quickly. It even got to the point where broadcasts of the news on ABC would have Auslan translations as well. The people concerned with this brilliant advance in accessibility need to take a bow. That it was achieved in such a short space of time is without precedent.

Of course, with this increased exposure came with it a fascination about Auslan.  Mark McGowan, the premier of Western Australia, played it for all it was worth. He made an announcement about  how much he had relied on interpreters and posted it on his Facebook page. At Easter he got the interpreter to teach him some Easter signs. Watch it below:

The interpreter actually became a bit of a celebrity. I have a vague memory of her being filmed with Fat Cat, who apparently still exists over in Western Australia. So after years of relative obscurity suddenly Auslan was everywhere.

One would have thought that the Deaf community would rejoice! No they didn’t! Some of them actually got quite angry. They became angry because their language, the centre of their identity, suddenly became the subject of everyones fun. Suddenly, Deaf people became invisible. This is a paradox considering Auslan seemed to be virtually everywhere.

So instead of celebrating the brilliant achievement of getting Auslan Interpreters on television and social media for all critical government announcements, the Deaf community got angry! They are rightly asking, What About Me???

You see, suddenly Deaf people became objects of pity that needed help. The beauty, the validity and the cultural eminence of Auslan was rarely discussed. I am sorry, but in trying to bring attention to Auslan what happened was that it became belittled. It became a welfare object. Providing Auslan helped the poor Deaf people. Watch the video below. The title says it all.

I feel for the interpreter. She is saying all the right things. She acknowledges that Auslan is her first language and that of her Deaf parents. She is highlighting the critical need to access information. But the media turn it into a heart warming help story. This is achieved just by the title and the reporters painful attempt at the end to sign WASH YOUR HANDS. But the worst thing is that there is not a Deaf person in sight. They are the helped, out of mind and out of sight.

This is not the first time that this has happened. I recall that the interpreter who was prominent in the Queensland floods became a celebrity as well. He became known as Sign Man. I think the issue this time is that the Deaf community are feeling that they are being ignored, or worse turned into people that require saving. Everyone seems to be getting credit at their expense. This has become more frequent in recent times due to the exposure given to Auslan by the Yellow Wiggle and Deaf Australia ambassador Andy Dexterity. Some say the exposure is good, others say it is the wrong type of exposure and Deaf people should be the ones who people are remembering and not the hearing performers.

The Deaf community are taking particular offence at hearing people profiting and getting credit at their expense. They feel that these hearing people are profiting from the Deaf community with not much acknowledgement to Deaf people. In Dexterity’s case they feel that he has become a self appointed spokesperson and worse, the Auslan that he uses is often not grammatically correct. That he has given TED talks on the topic further rubs salt in the wound.

I won’t get into the linguistics of it all, but I certainly feel that Deaf people are becoming invisible. I certainly feel that the image being portrayed is that Deaf people are in need of help, and by giving this help they are being saved. The image that we are active and contributing members of our society is lost. That’s why I love the story by the Guardian about Gavin Balharie. It is a Deaf person, a Deaf professional, a clearly talented and skilled person who is Deaf and telling the story. It is positive and we need far more of this and less of interpreters bopping around like bunnies. ( With apologies to the said interpreter, I realise that she was probably placed on the spot.)

But, having said all of this I wish the Deaf people concerned could take a moment from being angry to breath and celebrate what they have just achieved. Through the work of some grassroots Deaf people who set up a Facebook Page and then actively coordinated a campaign to get interpreters on screen for important announcements, thousands are benefitting!

In a few short months virtually every announcement has an Auslan interpreter on screen and in frame. No longer do the media cut the interpreter off because they are a “distraction”. The need and importance of the interpreter has been understood, even if it often does not always feel this way.

That was and is a momentous achievement. Take time to celebrate that. You have all earned it!

Footnote: There are many that say interpreters are better and more easily understood than captioning. I digress. One must remember that 95% or more of people who are deaf  (Not Deaf) do not sign. Their need to access information is vitally important. That’s why televisions in public places need to have the captions turned on and all social media postings need to be captioned. These deaf people that do not sign also need to be safe. That the captioning is sometimes of questionable quality is something that also needs to be addressed. Auslan interpreters and captioning, they must go hand in hand.

It’s a Deaf, Deaf World – Zoom!

Covid-19. There, I said it. It’s like we have not heard enough of it. I am betting that you, like me, are one of those people who are constantly scanning the news via newspaper apps and social media. Looking on in horror as America self destructs. Looking on in hope as cases in Australia continue to decline. Hoping, just hoping that the light at the end of the tunnel will lead to the lift of these damn restrictions. Dreaming for the day we can once again sit in a cafe and not feel guilty for having to pass someone by at arms length in the Supermarket.

Around the world countries have locked down. People are staying home. These lock downs are having a devastating impact. Both economically and socially. Leaving the economic situation aside, I have been fascinated about how the hearing world has responded to social isolation and having to adapt to such.

For us Deafies this is not new. Most of us have hearing families. We have all had to endure those frustrating gatherings where we are there in person but not there really. If you get my gist. We have all endured being the one deaf in the village. Be it at work, education or socially. It is often not fun.

It is tiring. It is often soul destroying. I know that mobile phones have pretty much ended the dinner table conversation for many. But, even with mobile phones people still converse. They talk under their breath about the meme that they have just seen or how Sheryl is upset because no-one liked her photo of yesterday’s dinner. It’s probably worse for people who are deaf because heads are down and people are muttering and distracted. There are very few facial cues too. Often all that the deaf person can do is immerse themselves in their own phone.

That is the lousy thing about technology. As much as it can bring us together, it can also isolate. In years gone by the dinner table was the place where people caught up. They talked about work, the days events, the news, what they heard on the radio and the coming events of the week.

These conversations are largely inaccessible to the deaf family member. It is the same at birthdays, the same at Christmas and other family type events like weddings and funerals. It is common that one person, often the mother, will provide little snippets of what is going on. Despite this, these gatherings can be lonely events. They are often stressful and demoralising. It is not for nothing many Deafies will go out of their way to avoid them.

Yes, its depressing. That is what often happens as the result of this wide spread isolation. Depression and low feelings of self worth. It is not for nothing data abounds that shows Deafies have a higher incidence of mental health conditions than the wider population. It is also not for nothing that we are often tired and exhausted. This is Deaf Fatigue. It is a real thing.

The medical term for Deaf Fatigue is Concentration Fatigue. In simple terms this is when someone has been concentrating hard for so long that they are mentally exhausted. They are often exhausted to the point that they are extremely tired and cannot function or work properly, if at all. In this age of the pandemic, I would hazard to say that Deaf Fatigue is pandemic across the world.

Khaflia (hearmeoutcc.com), explains that Deaf Fatigue eventuates because, ” The average deaf person will have to use various attention mechanisms in order to interpret and eventually understand what is said because they have to pay more attention than a person with typical hearing levels because they have to use up more of their brains’ resources when listening and lipreading.”

Deafies know this. At dinner we are catching snippets of conversation and trying to work out what people are saying with less than half of the information that our hearing family members have.  At work we are lipreading people all the time. It can be a colleague seeking assistance or providing information. It can be in a meeting where communication is supported through interpreters. We get the Auslan, translate it to an English equivalent and this means that we are often a few seconds behind everyone else. To contribute and be a valued member of a work team we have to be quick. We often have to stop people mid-sentence to express our views. Repeatedly, we must stop people all talking at once. Sometimes we are so behind and lost that we have to get them to repeat.

More often the Deafie relies totally on lipreading. Sometimes they combine a little bit of residual hearing with lipreading. Some can hear quite a bit, but to make sure they catch everything they have to concentrate to the max. Some are using live captions and, depending on the skill of the captioner, they often get less information than their hearing peers. Consequently, Deafies are constantly filling in the gaps.

These days I am using Live Transcribe. Great technology that is voice to text. I can use it for face to face or even for online meetings. It is surprisingly accurate. But it is phonetic and it can come up with some bizarre phonetic interpretations of what people say. I am still not sure what the supple nipple was referring to.

In the Covid-19 environment I am using it a lot with great success. But, yes it is tiring. To get the feel of a meeting over Zoom I must alternate from the tablet screen to my computer screen. To contribute I often have to talk over people because I cannot hear them. If I say nothing, important considerations might be overlooked. This means that I have to be assertive. I wave frantically at the screen or simply unmute myself and ask to speak. The looks of people when they are cut off can be quite comical. Thankfully, I have an empathetic team who understand my needs.

The point is that it is tiring. It takes a fair bit of skill deciphering what people are saying when you have less information to follow a conversation. It takes assertiveness, alertness and supreme concentration. I am generally known for my humour and adaptability. BUT, make no mistake, it’s draining. At the end of the meeting I am often very, very tired. This is something many Deafies understand but hearing people understand less so.

So, it was with interest this week I read about the relatively new phenomenon of Zoom Fatigue. I even had a little chuckle, as I am sure did many Deafies the world over.

Apparently, this new phenomena of video chats at work and to socialise is tiring people out. The newness of it, the fear of drop outs, the unnaturalness of the sound, the freezing screens and the like are causing tiredness and stress. Video chat, even if you can hear and see fully, is wearing people out.

The blog site, Remote Control, recently published an article on this very topic. The article discusses a number of reasons why people are finding video chats tiring; including:

  1. Being on a video call requires more focus than a face-to-face chat.
  2. Silence creates a natural rhythm in a real-life conversation. However, when it happens in a video call, you became anxious about the technology.” It also makes people uncomfortable.
  3. German academics showed that delays on phone or conferencing systems shaped our views of people negatively: even delays of 1.2 seconds made people perceive the responder as less friendly or focused.
  4. When you’re on a video conference, you know everybody’s looking at you; you are on stage, so there comes the social pressure and feeling like you need to perform.

I have deliberately chosen these points. I have chosen them because they virtually describe me as a deaf person to a tee. I mean obviously, for point 1, Deafies are required to focus way more than their hearing peers to converse. This is probably more so over Zoom.

Silence, all Deafies know this one. We have a paranoia of not knowing who is talking or even if they are talking. This causes us great anxiety.

Delays!! Well, we are used to that. We are often two to three seconds behind any conversation through the use of captioning or interpreting. If we rely on lipreading we miss information too. Particularly when people talk out of our view span. The need to ask people to repeat is embarrassing and causes further delays.

The German academics view is particularly interesting. Why? Well, because Deafies are often very quiet in meetings. This is because they are so fully focused and a little bit behind. I have lost count of the number of times someone has said to me that I needed to be more involved or that I was not part of the team. I am not kidding, this happens. The silence of Deafies is usually because it is very hard to get involved in a world focused on hearing privilege.

The final one, all Deafies know this. Being in a room with a third person, be it a captioner or interpreter, means everyone is looking at you. Interrupting people mid-sentence causes acute embarrassment. The feeling of the need to be part of the group, despite all the barriers, is ever present.

Zoom Fatigue, it’s real. I get it and do not want to underplay it. In this Covid-19 environment people have had to adapt really quickly and they have. But, they are feeling the strain off this new world and the pressures it brings. It is just uncanny how similar it is to the everyday deaf experience.

Here is hoping that at the end of all this people may just understand the challenges of us Deafies a little bit better. Empathy is a great leveller.

Finally, a big thank you to all the essential workers that have kept us safe and ticking over. The doctors, police, nurses, social workers, shop workers waste removalist and the like .. Without them where would we be?

Stay safe people.

A Success Story – Hallelujah

The poor old NDIS. It comes in for some stick. A lot of it deserved. A lot of it because it is understaffed and under resourced. Even more of it because it has an IT system that is not fit for purpose. Sadly, a lot of it because many within are just not right for the job.

Recently I wrote a scathing piece about a shocking plan received by a friend off mine. She is deaf with a cochlear implant. She received a paltry $300 for low cost equipment, nothing for community participation by way of communication support, $3000 for assessments, presumably to work out how to spend her $300. A quarter of her plan was allocated to pay a plan manager. She received $100 for her Hearing Services Voucher. It was one of the more bizarre and worthless plans I have seen.

A meeting was called with her LAC to find out what had transpired. The LAC then just laid the blame solely at then feet of the NDIS delegate that had approved the plan. Usually LAC and delegate have a plan alignment meeting (PAM) and discuss what has been recommended by the LAC. In this case it seems both LAC and delegate had no clue. But the LAC washed her hands of it. She laid the blame solely with the delegate.

She advised us to review. Sent the form to be filled in and basically went back to LAC land. Likely some other poor soul became the victim of her ineptitude. I knew that dealing with her was a waste of time. I instructed my friend to send the NDIS a letter appointing me as her advocate.

I set about compiling an official complaint outlining exactly how my friends plan should be structured. Through contacts I garnered who the delegate was, who her team leader was and who the LACs team leader was. I prepared a complaint and I outlined just how this plan should be structured. It was a modest plan that came to around $17 000. It included 120 hours of Aslan interpreting/Captioning for community participation, $1500 in low cost equipment and 10 hours of assessments to identify low cost technology that would benefit my friend. In addition to this we asked for 10 hours of Auslan Tuition to kick start the learning my friends husband and his family so that my friend would be less isolated within family gatherings. The mandatory Hearing Service voucher was also included.

The email went to LAC and her team leader, delegate and her team leader and the NDIS feedback email. I asked for a response within two working days. I heard nothing from the LAC or her team leader, nothing from delegate or her team leader but the feedback line responded on the third day. I was quite impressed because under the legislation they have 21 days to respond. That’s my understanding anyway.

BUT – Even though the email clearly said deaf, don’t call, please email; they called. I called back through the NRS and asked them to please email. They did within the hour. They promised to put in the review for my friend so that she didn’t have to mess about with paperwork. I asked if we could do what is known as an agency initiated review because of the appalling errors in the plan. For example the delegate apparently denied all access to Auslan interpreting or captioning because, “.. participant has a cochlear implant and can hear.”

I have to say the complaints person was brilliant. She tried to get an agency initiated review but couldn’t. She promised me to keep the complaint open and try to get the review completed as soon as possible. Woe and betide, she was as good as her word. Within a week the NDIS Reviews team contacted my friend about the review. BUT – Yes they called.

So anyway my friend gave me the number. I called back through the National Relay Service and said – Can you please email. So they did. They proposed a new plan that was still woefully inadequate. It had only about 30 hours of interpreting. So I emailed the plan structure to them. Within 24 hours all that I has asked for on behalf of my friend was approved. The whole process took about three weeks. I have to say, apart from phoning, the complaints team and the National Review Team were brilliant.

I emailed them back and thanked them for their professionalism. I asked if they could arrange a proper implementation for my friend so she could have her plan activated, understand the portal, how to access it through My Gov, understand how to book service and prepare service agreements. On my friends behalf they contacted the LAC organisation and asked them to arrange the implementation.

The LAC organisation did, and they emailed too. Hallelujah!  They arranged an interpreter too. Via Skype because of the social isolation going on. But, sadly the implementation was appalling. My friend wasn’t provided an activation code. No instructions for the portal or My Gov were given. The information about finding or booking services was not provided. Apparently the LAC just read out the plan.

So another complaint letter. I requested the LAC be removed, a new LAC be appointed, the implementation be redone, and properly. I sent this to the complaints people, the National Review Team, the LAC and her team leader. Within 24 hours it seems the complaints team had told the partnership organisation to do the job properly. The LAC was removed and a new LAC was appointed. Thankfully the new LAC knew what they were doing and everything my friend needed was provided. As my friend said to me, “It’s sad it had to happen that way.”

But the important thing is that the whole thing was dealt with quickly and properly. The NDIS quickly realised that the plan was a shocker and set about rectifying things. They did all that they promised and ensured that my friend got a plan that she needed. A plan that could make a difference to her life.

It is certainly true that it should not have happened like this in the first place. Sadly, there is some dross within both LAC partner organisations and the NDIA itself. Many of them should not be in the role and do not understand disability. Many are just lazy, make assumptions and do not use the considerable resources and support within the NDIA to make the right decision. Simple things like consulting subject matter experts and the operational guidelines to ensure a plan that meets needs. Simple things like familiarising oneself with certain disabilities so that one at least knows how the disability may impact. Simple things like empathy and caring will go a long way.

BUT, as this story shows, within the LAC partners and the NDIA are really good people that know what they are doing and do care. There are people that deliver what they promise and do the right thing. I know from working in the system for nearly four years that there are many of these people. Sadly, there are also too many that should not be there. They need to be weeded out. Recruitment needs to be revamped and a deep knowledge of disability needs to be a mandatory requirement for anyone that gets job in the NDIS environment. Lived experience is preferable.

To the people that ensured my friends nightmare with the NDIS ended quickly and that she was provided with plan that could make a difference I say thank you. To the people that made such a mess of my friends plan in the first place, I beg you to get another job – Potentially you are ruining people’s lives!

 

End note – I received no remuneration for assisting my friend. I did it entirely voluntarily. However, I believe the service that I provided should be properly funded so that participants can get advocacy and support both pre and post plan. Ensuring quality plans will lessen reviews and the investment in such a service will save many hours of work and pain.

For the Clueless

It is official. It is pandemic. The NDIS and LAC partners are infected with the clueless. At least twice a week I am being contacted by someone who has been dished out a totally irrelevant and pathetic plan. As a good friend said to me recently, “We worked so hard for the NDIS.”  We can’t sit back any longer and let this clueless lot ruin it.  And ruining it they are.

So I am going to publish a guide. A simple guide for the clueless. An NDIS Planners Guide for Dummies, if you like. Cos, you know, they read this blog wherever I publish it. I am hoping that this simple guide will help them. Come on people don’t laugh, a bit of optimism please.

Firstly, my dear Planners and LACS, the compulsory questions on the CRM will not give you all the answers that you need. I know some of you think your job is to just read out these questions verbatim. I am here to tell you that’s just being lazy. Quite why you have to ask about people’s incomes is beyond me, but you do. For a scheme that is not means tested its a stupid question to ask. Accordingly, I always told participants (disabled people), that they didn’t have to answer the question. And they didn’t.

Unpacking a persons needs is an extremely personal thing. Accordingly, I always apologised to them for the personal questions that were about to ensue.

Asking people about their personal hygiene and personal requirements takes a great deal of sensitivity. If you don’t have that, get another job. Let it be your mantra – PARTICIPANTS ARE REAL PEOPLE. It seems silly to have to remind people of this. Sadly, there are lots of clueless robots out there that forget this and think their sole job is a production line attendant for NDIS plans. Roll them off … NEEEEEEXXXXT!

Now, a persons plan is complex. But at the same time it is a simple thing.  It really can be broken into a few parts:

  • The home.
  • The community.
  • Skills that can and need to be developed.
  • Technology and adjustments that are required.

It really is that simple. Not complicated at all. Now, before you ask the compulsory questions get to know the person and their needs around these four simple things. Once you have done this, and you have developed a picture of the persons life and needs, you can better examine their goals and even expand on them. Let me give you an example.

Ok, at home:

  1. Who lives with you?
  2. How do they support you?

Now, let’s stop there. if the disabled person is an adult, bear in mind that wonderful NDIS principle of an ordinary life. In an ordinary life an adult is not living with their parents/guardians forever. An adult is not supported by their parents/guardians forever. Most people who are married do not have their spouse doting over their every need. Most people living an ordinary life do not have their children rushing home to support them. In an ordinary life families support each other but they also enjoy each others company.

Now, in the case of children, an ordinary life generally does not involve parents having to give up their jobs. It does not involve them looking after their children intensively 24 hours a day. Sure, many parents will and do support their kids in this way but they should not have to.

Remember, as well as an ordinary life, the NDIS is built on a principle of economic participation. This is true for parents and all supports. They have a right to work.

In doing so they earn money, pay taxes and, god forbid, even contribute to paying for the NDIS. Parents and carers have a right to an income, to enjoy life and, more importantly, enjoy a normal relationship with their disabled spouse, child, sibling etc. This relationship should not solely be based around meeting their disability support needs.

LAC and Planners out there, you will hear your team leaders tell you that the NDIS does not replace informal supports. They will insist on the principle of parental responsibility. Well, I am here to tell you that they are wrong.

They are wrong because they ignore that other important principle of “maintaining informal supports.” Yes, the NDIS was designed to also support informal supports. To allow informal supports to work, to allow them to participate in the community and, crucially, to allow them an ordinary relationship as possible with their disabled family member/friend.

What happens if “maintaining informal supports” doe not happen? Well, often the family unit breaks down. It actually costs the NDIS more in the long run when that happens. The idea is to facilitate and support the informal supports. Not to give them as little support as possible because “informal supports are available.”

So, it’s not the responsibility of informal supports to drive the disabled person everywhere. It’s not their responsibility to give up work. It’s not their responsibility to be on call 24/7.

The NDIS  has a role so that the disabled person is as independent as possible. Remember this too – An aim of the NDIS is so that informal supports can have as “normal” a relationship with their families and friends as possible. Let this be your mantra because this is an “ordinary life.”

So, when you are looking at the four areas that I have mentioned let yourself think only what is required for this person to be as independent as possible to:

  • Make friends
  • Communicate
  • Be accepted
  • Be mobile
  • Be happy
  • To participate in the family, community and economically.

You touch on all of these areas and you unpack and relate it to the participants goals. Not only that, you assist the participant to identify gaps in their goals and then to improve and strengthen their goals. The solutions are in a whole range of areas:

  1. Therapy
  2. Personal; support like support workers, cleaners etc
  3. Respite.
  4. Technology.
  5. Transport.
  6. Accommodation.
  7. Vehicle modifications.
  8. Home modifications.   And so on and so on.

Most importantly remember that the aim is:

  1. To allow the person to participate in the community, family and economically as much as possible.
  2. To allow the participant, particularly if they are adults, to be as independent of informal supports as possible.
  3. To maintain the family unit and informal supports.
  4. To allow the disabled person and informal supports to enjoy each other and develop a relationship that does not solely focus on CARE and SUPPORT.

And yes, there will be times when you do not know the answers. There will be times when the disabled person and their supports do not know the answers. There will be times where informal supports say they want to do it all. Each person’s plan is an individual thing. I have a couple of tips:

  1. When you or they do not know, RESEARCH solutions!
  2. When informal supports insist on doing it all themselves, try to dissuade them because the NDIS is there for a reason. Most probably, and eventually, their need to be a martyr will lead to burn out.
  3. Think how you would feel to have your spouse, parents, siblings, friends etc catering for your every need. A disabled person wants independence and normal relationships – not one solely based around their informal supports providing for their care and support 24/7
  4. if you have never encountered a persons disability, at least do your research before you meet so that you have SOME basic knowledge.

If you don’t have answers or some of these basic understandings, do not even consider writing or submitting the plan!!!

And to the LAC who recently responded to a friend off mine who requested to be able to explore her sexuality and personal needs such as masturbation by telling her – use your husband – Get out! And don’t come back!

An NDIS plan is complex but not rocket science.  It is also not is an excuse to dump responsibility on informal supports … because that is not an ordinary life. is it???

 

SCREAM!

Picture is of a woman holding her head in her hands and screaming in frustration.

I love the NDIS, I really do! It is the best thing that has happened for people with a disability. It was built on principles of simple human rights. A recognition that people with a disability had a right to be fully included in society. A recognition that in doing so society also benefits. Invest and you shall reap. Our Treasurer, about to embark on a stimulus package because of our sick coronavirus infected economy, might want to have a deep think about this. Imagine how much stimulus could happen if Australia properly invested in making all of its infrastructure accessible so that people with a disability could access it any time and any place.

But as much as I love the NDIS I also hate it. It frustrates me that this visionary concept was so screwed up by bureaucrats with no clue. Instead of seeing the NDIS as a model of human rights that benefits everyone the bureaucrats have seen it, as they are trained to do, as a cost. So instead of people with a disability being valued and seen as an asset they are once again seen as a cost and a burden. The narrowness of this thought process makes me scream. Not want to scream, actually scream.

I am no longer in the NDIS space. I have since moved on to a wonderful job that I enjoy immensely. Even so the NDIS is never far away. In my own time I assist people who contact me to deal with the NDIS. I do this because these people have no help. They ask me to help with a whole host of things. requests for reviews, challenging decisions, dealing with access request forms, setting their goals and sometimes just lending them my eyes so that they can vent about their immense frustrations in dealing with the system.

You know there are great people in the NDIS. They know they system is shit. They provide me with leads and contacts. Take it from me, the NDIS and LAC program is full of good people, with good intensions and who are restrained by bureaucrats and leaders who have no clue. Who are restrained by a Government more interested in restricting spending than designing a system that truly invests. Ask yourself this question; since the NDIS started how much more accessible has your local community become so that people can properly utilise the funds they have received from the NDIS? – How much capacity building in your community has actually happened? I bet most of you are hard pressed to know.

Obviously, because I am deaf, Deaf and hard of hearing people approach me regularly for advice. But I have others who ask for help to including professionals. So in this last few weeks I have:

  1. Been appointed as an advocate for a deaf person with bilateral cochlear implants who got one of the worst plans I have ever seen.
  2. Met with her LAC
  3. Prepared her complaint to partner organisation and NDIS
  4. Had the NDIS initiate her review with a promise of a quick resolution ( I laughed when they said that, but they may surprise me.)
  5. Assisted prepare a response because yet another family were denied Auslan in the home. Because sign language development, according to some in the NDIS, is responsibility of the school. (Scream with me.)
  6. Discussed with key disability organisations how to assist families who cannot understand the decisions of the NDIS nor implement their plans.
  7. Discussed with key disability service providers how we can help families and individuals get past the access process because they can’t understand how to request access. If they do get the Access Request Form, many don’t not have the literacy nor understanding  to  get the request form into the system.

Just to remind you. I don’t get paid for this shit!

You know, I even applied myself. After working in the NDIS space for four years I decided to apply myself. I went online, answered their access questions, went through the steps and finally they acknowledged that I probably meet access and told me to call the 1300 number. I looked all over the page to see if there was another option for people with communication issues or hearing loss and their were none. No online text chat feature (They have a robot one that is apparently hilarious,) There is no email. There is nothing except the phone number. This is the NDIS. Australia’s premier disability support program, hardly accessible itself.

The website thus us that, ” If you need help filling in the form or making the call, you can contact your Local Area Coordinator, Early Childhood Early Intervention partner or your contact your local NDIA office.” GREEEAAAAT, perhaps not. You see the organisation I worked for could only help you fill in the front page. We would then give them the form and tell them to go see their Doctor and provide all the evidence required to meet access. This was because the organisation didn’t want any legal responsibility for the application or to get blame if all went arse up.

I am told from reliable sources that there are some LAC organisations that won’t deal with access requests at all. Apparently, if you have a disability and walk into the office or call them they ask if you have an NDIS number. If you do not have an NDIS number they send you away and say come back when you have one. When challenged they say they are unable to assist with access requests forms and only assist once a person has been allocated an NDIS number.

The NDIS website says to go in. You go in and some won’t help until you have a number. You can’t get a number until you meet access. You can’t meet access until you send in your form. If you can’t understand the form or the process what do you do? If the LAC organisation won’t help who does?

Apparently some disability organisations might be able to assist but not everyone fits within their remit. There are advocacy groups that help with appeals but they are not funded to help with dealing with the access steps. What happens if upon don’t live near a LAC  or NDIS office? What happens if you are immobile and can’t get out and about much because – You need the NDIS funding to do that? What happens if you are from a CALD background and, god forbid, can’t even read what’s on the website. What happens if you have an intellectual disability and literacy issues and no support? Well for many you are just simply fucked. There are many, many people in this boat!

And that is the system we are dealing with. Australia’s premier disability program virtually in accessible for many right at the entry point. Don’t get me started about plan implementation for those that actually have a plan … That’s a novel in the waiting!

Feel free to scream with me.  Common NDIS, you have to do better. Make your system accessible!

PS: For the record, I rang the 1300 number for an access request form. I was promised one in 14 days. Four weeks later I am still waiting!

The Elders

Hello Deaf and hard of hearing people of Australia. Did you wake up this morning and turn on your television? Perhaps you went to channel 9 or Channel 7 to watch their trash journalism. Or perhaps, like me, you went to ABC and watched the eloquent David Speers and his panel intelligently dissect the week in politics. Maybe you even watched cartoons with your kids. God knows, the cartoons have more substance than a lot of what is on television. Married At First Sight Fans, I am looking at you.

You know that you could sit there and watch television all day. You would find that nearly every show is captioned, bar the newer digital channels. That’s a far cry from yesteryear when we had just a few shows captioned. We stimulated our intellectual buds with such gems as Neighbours and Home and Away. The ABC was our point of call because they had more shows captioned than the other channels. I recall Channel 9 captioning 60 Minutes and then stopping because the Deaf and hard off hearing community complained that one story didn’t didn’t have captions when it should have. Rather than say sorry they just stopped captioning altogether. “Take that you ungrateful bastards..” is what Channel 9 seemed to be saying.

Have you been to the cinema and watched open caption movies. For a time our only option was a once a month showing if we were lucky and only in the city at one big cinema. Then we had the dreadful Captiview introduced to give us access. The bastard contraption was never charged, had drop outs, caused eyestrain and god help you if you were taller than six foot and needed to be comfortable in the cinema. But over time more open captioned movies have been reintroduced. If you are lucky to live in some regional areas you might even get more than one open captioned session a week. We still wish there were more – But open captions are back – We thought we had lost them forever.

And at work did you have interpreting provided or Live Remote Captioning? Did you use your Jobaccess provided iPad to view the captions or access an interpreter from Japan because all the Auslan interpreters in Australia were booked up? Did you use your NDIS funding to attend a wedding or meet with the Tradie doing your home renovations? Did you have access at University to attend lectures and tutorials? Did you know that there was a time that the only access at university you got was a buddy volunteer notetaker who you had to chase all over the campus for notes? You prayed to god that they didn’t drop out of the course otherwise you’d be fucked. That’s if you were not already.

Did you know that there was a time when none of the above were available? That Deaf and hard of hearing people couldn’t even access the phone? Jobs were limited. Isolation immense. Incomes low. Nearly all people who were Deaf worked in manual labor type jobs or in offices doing data entry. Did you know that in 1983, just 37 years ago, I was the first deaf person to complete his Matriculation at a unit for hearing impaired in South Australia? (That was their claim anyway.) It was not that long ago that if you were Deaf or hard of hearing your life choices were extremely limited. I mean in 1986 I broke my leg for the third time and had to hop to my neighbour to call an ambulance because I had no access to the phone. This was life for Deaf and hard of hearing people a little under 40 years ago.

But now we seemingly have endless choices. The NDIS, shit as it can be, has provided incredible access to people who are Deaf and hard of hearing that are eligible. Interpreting for trivia nights. 21st birthdays you don’t need to sit in a corner on your own anymore. Christmas, if you so wish and you can find an interpreter willing to give up their Christmas Day, you can have those dreaded hearing family get togethers interpreted. This access, these boundless opportunities, who do we have to thank for them?

Well, a large part of this access is because of our Deaf and hard of hearing Elders. They fought hard for us all so that we could have the access that we have today. I could give you a roll-call of the well known Deaf and hard of hearing advocates but I will not. Why? Well, because there are many Deaf or hard of hearing elders who worked hard at their own workplace, within their own communities, at their own places of study or simply by supporting campaigns like the campaign for better captioning. These Deaf and hard of hearing people were just as valuable to the cause as some of our better known advocates.

And you know what? Despite their battles, largely on our behalf, many of the Deaf and hard of hearing elders cannot access any of these supports. One must remember they gave go their time largely voluntarily. They have retired, JobAccess has passed them by. The time where they could have been at university they have missed because they were too busy fighting for our access. The tragedy of all of this really is that these elders, many of them are not eligible for the NDIS.

You see the cut of point for the NDIS is 65 years of age. If you were lucky enough to qualify for NDIS before you were 65 then you can take that support til death because the NDIS is supposed top be Cradle to the Grave. But over 65 you have nothing. Nothing at all. Perhaps a bit of interpreting through NABS for private medical but that’s it.

How shit is that? These people who have worked so hard so that we could have the access and opportunities that we have today have nothing. They have to try My Aged Care – Unless they are frail My Aged Care will tell them that they don’t qualify. Even if they do qualify My Aged Care won’t provide interpreters. They could under Community Participation programs but they won’t.

So currently the Deaf and hard of hearing Elders who we need to be so thankful to have nothing. But they are still fighting. They have set up their own Deaf Elder Network. They are lobbying to the Government. They are being interviewed on radio. They are campaigning for equal access. Will it ever stop for them? Are the younger Deaf and hard of hearing people campaigning for them and supporting them? Are our advocacy groups making a noise? I don’t see it. I just see the Elders fighting the good fight, a fight they have been fighting all their life.

It is wrong! we need to support them. I urge every one reading this to seek them out on Facebook and lend your support. I urge you to distribute this article so that people are aware of what is going on. If you have skills and time to support them put your hand up and help them with their campaign.

We owe it to them – They should be enjoying the fruits of their labour, not fighting til they hit the grave. Let’s all fight and get the Elders the support they richly deserve. They have earned it!

That’s It, Im Done – By Anonymous!

I ain’t no super Deafie. I’ve had enough really. My NDIS plan was the last straw. I’m done!

They gave me $5 700. A quarter of that was to pay a plan manager. $5 700 in my budget and over $1400 of that goes to the plan manager. Meanwhile I get a couple of thousand for capacity building but no communication support. No interpreting nor captioning, nothing. Quite how I am expected to do capacity building and not be able to communicate effectively is anyones guess.

And then I get $400 for low cost equipment. OMFG. What am I supposed to do with that. $100 apparently is to pay for my Office of Hearing Service Voucher. Just exactly what I am expected to spend $300 on I do not know. I wanted to make my house safe. I wanted flashing smoke alarms. A flashing door bell. I wanted to link it with my smartwatch so it notified me. $300, let that sink in.

I never wanted to apply for the NDIS. I dreaded it. I have had no luck with access in the past. It’s been a long hard struggle. I am constantly fighting the system and never ending audism. I am constantly fighting prejudice and I am tired. My mental health is shot. I am on anti-depressants. I have lost faith in the world.

I am deaf. I have two cochlear implants. My implants help me. But they have their limits. I need assistance in big groups. I need assistance to communicate and participate. The assistance is not just for me, it’s for hearing people too. I learnt Auslan later in life to help me to communicate. I work as a deaf professional in the disability sector.

I have studied and worked with people who I expected to understand disability. Funny that these people are the ones that often give me the hardest time.  I asked for interpreters at university and I was at first denied. Too expensive they said.  I had buddy note takers who forgot to give me notes and I was for ever chasing them. Study was hard. It was a constant battle.

When I complained about my “peer” note takers I was seen as a trouble maker. I was shunned. Peers stick together right? Don’t believe it. University was a lonely place for me. I was seen as a thorn in the side and a trouble maker because I fought for access, demanded interpreters and demanded extra support. Threatened them withe DDA and so on. Hearing people don’t have to deal with this shit. It’s tiring.

I work with hearing people who are professionals who supposedly understand disability. Bahahahahahahahah. My first boss would hang up on my Facetime calls. I preferred FaceTime so that I could lipread her. She would keep calling me despite knowing of my struggles. My 35 years of lived experience as a deaf person meant nothing to her. I was going to do it her way or it was the highway. I wonder just how much she did learn from her university education.

I had another boss who thought it was OK to walk up behind me, lift up my hair and ogle at my cochlear implants. Yes, behind me. So sorry if I jumped up startled when she did so. I don’t have eyes in the back of my head you see. She seemed to think that I was some sort of interesting specimen. She could just touch me and interfere with my boundaries at any time. “Oh Deaf girl over there, what an interesting thing, I will just go admire the fact that she is alive.” 

Hearing professionals who work with disabled people never cease to amaze me. I was banned from using the National Relay Service because it upset clients, apparently. I have to attend conferences to keep my qualifications up to date. Hearing professionals seem to think it’s ok to cancel captioning or interpreting because in their opinion the workshop nature of the event will be easy for me to access.  And anyway they have assigned Bobbie to help me if it gets difficult.  FFS these people are supposed to get the impact of disability. They are totally fucking clueless!

And fucking government agencies like Jobaccess and NDIS who keep calling me. Look at my fucking file, it says don’t call. I mean just today to  discuss my NDIS plan they called. Then they emailed. Then when I emailed back they called again. I have a bloke helping me with my appeal. He sent them a strongly worded email and said that if they called again I would be complaining to their boss and the NDIA itself. But why must I always fucking complain.

Then there was my boss who gave me a verbal warning because there were parts of the job I couldn’t do properly because I couldn’t hear. Well fuck off!!  You knew I was deaf when you employed me. And fuck it, if you are such an expert on deafness why didn’t you give me proper access to start with.

It’s been a hard slog. I am emotionally spent. I have depression and sometimes I just cannot cope. I had a breakdown once in a learning environment. Did they help me?  Did they fuck! They sent me home because I was distracting the other learners you see. These are people that work with disabled people and are supposedly trained to do so. They have no fucking clue.

I finally got around to applying for NDIS last year after much cajoling from my cochlear implant audiologist. Because they would cover the cost of batteries. (I use two 675 batteries, per processor and every 24 hours). Because they would cover the cost of repairs of my cochlear implants. Because they would… promise me the earth and the sun and the moon. And all the planets in between. And it would be very easy, she reassured. As I had no residual hearing left, it would be very likely that I would get automatic approval.

So I applied. But fuck me I wish I hadn’t. It is more stress than its worth. Already I am crying. Already I am having anxiety attacks. Every time my phone rings I think it is them. I go on Facebook and I see that the NDIS have fucked up with so many people. Some poor parent can’t get a wheelchair for her kid. Her kid has outgrown his chair. He is in pain. He has pressure sores. They can’t even tell her where her application is up to. I realise that’s what I have to look forward to if I choose to appeal. My anxiety goes through the roof!

Is it worth it? I don’t think it is. Just fuck off!! I am done!

 

Tales from the Crypt – NDIS Horror Stories!

I no longer work in the NDIS environment. I am thankful really. It’s weird, but I am more useful on the outside than in. Everyday I check in on the NDIS Grassroots Pages. The stories horrify me. What you often see is a totally rigid interpretation of the rules. Last year the NDIS, at least in the region I worked, began to crackdown on support coordination. They would only give it to plans that were seen as intensive or super intensive. They would consider it for general and supported plans only if participants were from Culturally and Linguistically Diverse backgrounds, Aboriginal Torres Strait Islander Backgrounds and if participants were having housing issues. What this triggered was a series of cuts to Support Coordination that angered many participants.

They were angry and, in most cases, rightly so. It was just a rigid and inflexible interpretation of the rules. It did not consider wether a person or their support people had capacity to set up and manage their plans. It didn’t consider a whole range of socio-economic factors. It rarely considered family size, family issues or anything like that. There were plans that were very complex and borderline intensive but still had support coordination cut. Many families and participants, as a consequence, suffered extreme stress. All in the name of sustainability and rigidity. It was and is disgusting.

It took me back to when I started working in the NDIS field. I was a Senior Local Area Coordinator. When I started it was at the time of the dreaded systems crash. The system crashed regularly after that. It is a dreadful not fit for purpose system. But this crash was the mother of all crashes and took something like three months to fix. Meanwhile there were new NDIA planners and LACs ready to go who who had limited access the system. It led to a dreadful backlog.

What basically happened was the system migrated to a new system. In a perfect world all the information from the old system would come over. It didn’t. What this meant was bills didn’t get paid. Participants didn’t know how much money they had left. Service providers were pushed to the brink of bankruptcy because they had no cash flow and couldn’t pay salaries. Participants didn’t get much needed support. It was a shambles.

We started in July and we didn’t really get into planning until well into September. We were a new roll-out area. The way the NDIS works is that participants that are defined, in other words receiving state Government services, had to be rolled into the NDIS first. Other participants like new applicants had to wait until that was completed before they could have a planning meeting and a subsequent plan.

Not a lot of people know but LACs based in partnership organisations like Feros, Brotherhood of St Laurence, United and so on were really only supposed to do general and supported plans. The NDIA planners were to do intensive and super intensive plans. However, because there was such a backlog it did not happen that way. LACs did all sorts of plans. NDIA planners did all sorts of plans. It was a real mixture.

This brings me back to support coordination and the rigidity of NDIA processes. You see LACs were not allowed to request support coordination. But they were doing intensive plans and probably super intensive plans. Meanwhile NDIA planners were doing supported and general plans that LACs were supposed to be doing.

Here is where it gets really bizarre. You see NDIA planners were told to give all of the participants they assisted support coordination. I know this because a planner in our region told me. What we saw, as an example, is a relatively small plan of say $4000 a year that would have in excess of $3000 for support coordination. I saw one or two plans in the second year of the rollout that had been completed by planners that actually had more support coordination money than money for supports. It was that farcical.

Meanwhile pre 2017 and back in LAC land we, the LACs, were up in arms. Why? Because we were completing complex plans that obviously required support coordination and it was being denied. It took a couple of months before the NDIA backed down and allowed the LACs to put support coordination in plans.

Meanwhile NDIS planners were handing out support coordination like confetti even for simple plans. At the same time LACs had to plead and beg to get the NDIA to change its rigid processes so that they could put support coordination in obviously complex plans. It was farcical, something straight out of Monty Python or Yes Minister.

It didn’t end there. You see the dreaded data transfer that led to the systems crash meant the the NDIA were dreadfully behind with their KPIs. Unsurprising given that many LACs and planners could not do any actual planning until September, three months into the roll-out. The pressure on LACs and planners was immense. The Minister of the time was completely inflexible and insisted, despite the crash, that we all had to meet our KPIs because, and this is my opinion, it was embarrassing the Government.

My own employer dangled carrots under everyones nose. If we met our KPIs they were going to close the office down for Christmas and give everyone a fully paid Christmas break on the house. They drove the poor LACs hard. New LACs learning the system and doing complex plans were expected to submit a plan a day.

A board was introduced where we recorded our submissions. Everyone could see who was submitting a plan a day. One LAC dubbed it the the board of shame because it was obvious which LACs were struggling. He protested loudly that what we were doing was unfair and was leading to substandard plans. I got directed to tell him to toe the line or get out. One LAC messaged me so frightened at the way that our hero was being treated that she said she was frightened to say anything and was going to the Union. I encouraged her to do so.

And you know what? The fellow was absolutely right. The push for numbers to meet the KPIs, despite the circumstances, led to poor quality plans that took the better part of 2017 and some of 2018 to fix up, if at all.

The real tragedy was that the access team in Canberra, so that we would have enough participants to meet the KPI, approved just about everyone. By doing so it meant more plans could be approved.

What was the result of this? Well the NDIS realised that it had many hundreds, probably thousands, of approved participants that actually didn’t meet the access criteria. In some cases they began to change the rules so that participants that previously met access now did not. It fell to us, the LACs, to do all the dirty work and inform the participants that they were no longer eligible.

Come review time many people who were hard off hearing and been approved were now told that they were no longer eligible. To make sure they were not eligible the NDIA changed the rules stating that only people with a hearing loss of 90 decibels or over automatically qualified. If your hearing loss was under 65 decibels you didn’t qualify at all. It fell to us to inform the participants that they no longer met access. They were angry and rightly so. There were others who also suddenly were deemed not disabled enough and had their eligibility questioned or removed.

We then had the tiresome administrative issue of removing support coordination from plans that should never have got it in the first place. On the other hand we had to advocate hard, often unsuccessfully, to have support coordination added to those who should have had it.

The mess was all of the NDIA’s own making. As is always the case, it was the participants that copped the brunt of it!

Have the NDIA learnt from all this? I don’t think so. They continue to make illogical eligibility decisions. They want to remove transport support for all psychosocial disabilities. They banned transport being funded through core funds and then reversed it. And the provision of support coordination remains an unmitigated mess!

These, my friends, are my tales from the NDIS crypt. Sleep well because I am sure there are even more nightmares to follow.

THIS!!

Take a look at the Graphic to your right. Let it sink in. Think long and hard about the message. Think long and hard about what it actually is saying. It may not mean to say that but that is the message. Take along hard look because what you see there is very poor activism and advocacy that divides.

I am pretty sure that was not the intention but this is exactly what it does. It was first publicised on Facebook. A couple of us gently prodded the poster to let him know that it was not worded very well. We gently asked him if he could please reconsider it. Sadly, gentle prodding did not work and the graphic continues to do the rounds.

It’s a promotion from Hear For You. Hear For You are great. They support and mentor young Deaf and hard of hearing people. I can forgive them the name. It’s a very bad pun that basically highlights hearing as being the way. Of course it is not.  But its catchy and I like puns so I can forgive it. That said, it’s probably not a good name in the scheme of things and I reckon people should gently prod them to change it. Not that I think that they will.

Now, Hear For You is a mentor based group. I am an old fart now. I am 55 but I know a thing or two. I thought as kind of elder that has been around the block a few times I would mentor them as to why the graphic is wrong and dangerous. I am well aware that it was probably someone other than the young people that is pushing it. I will give them the other side of things

The graphic itself is absolutely correct. Auslan users are actually the minority. People with a hearing loss who do not sign are the vast majority. However, society has a fascination with sign language. They think everyone who is deaf can sign. I speak and I have lost count of the number of times that I have disclosed that I am deaf and then someone tries out their rudimentary sign language on me.

I know that they mean well. But I could be one of the 95 % of people with a hearing loss that do not sign. Cue embarrassment all round and awkwardness. Of course they could ask me if I sign and then I could confirm yes our no. But it rarely happens

And, of course, when it comes to access for people with a hearing loss it is nearly always sign language interpreters that come to the fore. I have written about this often. Live theatre is predominantly accessed through sign language interpreting. A smattering of live theatre is captioned. The balance of access is unfair. We all need to acknowledge this.

In the recent bushfire emergencies nearly everything was about sign language and its provision. The Deaf community even set up a page where people could report the non provision of interpreting for emergency announcements. A couple even made an impromptu video  urging that interpreters be on screen. Can you see the Interpreter. This was widely promoted via social media.

But you know what? Even though they focused on sign language they also acknowledged the need for captioning. They encouraged people who submitted posts about the need for interpreting to also state whether captioning was provided. They did that because they acknowledged advice stating that people with a hearing loss all over needed access and not just sign language users. What was an initial push for sign language interpreters actually provided advocacy for both signing and non signing people with a hearing loss.

This is why the graphic at the start of this article is wrong. Why? Because inadvertently by highlighting that only a small percentage of people use sign language, without any other explanation, they made its sound like that sign language users do not matter because there are not many of them.

I am sure this was not the intent, but this is what came across and more than a few sign language users were miffed by the message. What ill thought out campaigns like this do is divide. They also reinforce the age old image of sign language being lesser in value than those that speak. Even if this wasn’t the intent, this is what happened.

A few years back the Royal Institute for Deaf and Blind children had a fund raising campaign that featured a teddy bear with no eyes and no ears. It was horrific and deficit based. I wrote a Rebuttal about it – You can read that here – I Saw a Bear

Within two days the CEO acknowledged how offensive the campaign was and started to withdraw the advertisements. No small task given that they were on billboards, bus shelters, publications and so on. But to their credit they listened. Hear For you – I urge you to do the same. Withdraw this campaign and work with the Deaf community to design one that is inclusive for all people with a hearing loss.

Because THIS is the right thing to do.