Have you been listening to what the Govmint is saying about the NDIS at the moment? The message is consistent from the PM, the previous NDIS Minister Roberts and the current one Minister Reynolds. The NDIS is costing too much, it needs to be brought under control. Yup, us Disableds are a burden you see. We be expensive folk  

It does not matter that, in fact, the NDIS is on track to meet all predicted expenditure and costs. There has been nothing out of the ordinary really. All predictions suggested that expenditure would be what it is now. But this is an inconvenient truth for the Govmint. Best not mentioned.  But you can read it here, cos I am quite happy to mention it.  

https://www.smh.com.au/politics/federal/ndis-on-track-with-forecast-budget-despite-morrison-s-claim-of-cost-blowouts-20210511-p57qt1.html

I laugh when I hear/see the Govmint talking about how expensive the NDIS is. You see Deaf people and people with a disability often contact me for assistance with reviews for their NDIS plans. Basically, they get shit first plans or they have drastic cuts made to their second plans. Some people contact me because they have reviews rejected and have gone right up to the tribunal to appeal.

It is often laughable really. Some of the plans are so bad they make you weep. Indeed, many of participants are so upset with what the NDIS dish out to them that this is exactly what they do, they weep. Fixing the mess that they make takes time and many person hours. It takes my time, it takes LAC time, it takes delegate time and it takes the review team time. 

It often takes many months to resolve. Not helped by the NDIS insistence in calling me and deaf participants by phone. When they don’t get an answer, they send an email asking us to get in contact with them. But not before they try to call at least a few times to make contact. Time equals money and the incompetence of some people within the NDIS adds greatly to this time and the cost.

More recently the NDIS has been refusing Deaf people a specific alert system. It is called Visualert. It is preferred by many because it is hard-wired and colour coded. In this way the deaf person knows specifically what they are being alerted to – Red might mean fire, blue the baby, green the door etc. It is a safer system that does not rely on alert towers, pagers or Wi-Fi. It is all hardwired and can be linked to many things including security systems. It certainly is a little bit more expensive than some, but it is safer and apparently more reliable.

Part of the problem is that the NDIS approves it for some people but not others. Some delegates are convinced that the benefits outweigh the costs. Some are not convinced and are insist on cheaper and more inferior systems. This lack of consistency in the making of decisions causes a lot of frustration and grief.

So, participants point out that their friends got the system and rightly ask, “Well, why not me?” The NDIS don’t care. Delegate decides no and that’s it. Precedents mean nothing. Sadly, it seems, overall safety also means nothing.

What happens is request for the system is rejected as not being value for money. Participant requests a review to have the system added. They spend considerable amounts of their plan funds getting reports done by OTs to justify the need for the system. Usually around $2000 they spend of their NDIS money on these reports.

The review goes in and gets rejected after many months and many person hours. This includes, as I said, my time, LAC time, delegate time, review team time and so on. You do the maths, but again this is many thousands of dollars.

Some deaf participants give up around here. Many do not and it goes to the tribunal for appeal. Again, participant will spend money to update reports, will spend money on people like me to get advice and this is a lot of money … It is repetitive to say so, but it is many thousands of dollars.

The NDIS, because they are stubborn and don’t want to accept that they were wrong, use tribunal time which includes admin to book in the hearing, it includes booking of interpreters and it includes providing advise as to where free legal advice can be had, ( To name a few costs.) Govmint money is spent on the free legal time.  Govmint also engage their own lawyer to fight their corner. The process can take up six months or more. Sometimes they even tell the participant that they want to have the NDIS own independent assessor come in and do an assessment to justify the NDIS original decision. How much they pay the independent assessment, I do not know, but it would be thousands of dollars again.

All this for an alert system that costs around $7000. The NDIS rejects the request and then defends their decision come hell or high water, bugger what that cost might be. And remember, for some people they actually approve the system. Yet, for whatever reason, will reject it for others and then spend many thousands of dollars defending themselves.

Do you know that the reviews team in the NDIS are so over worked that they cannot keep up with requests for reviews?  The reviews team staff turn over must be horrendous or perhaps the never ending growth in reviews is why the review team is always recruiting. Some of the decisions of the review team make are completely laughable and with no grounding in logic, whatsoever.

Because Let me tell you now spending tens and thousands of dollars, perhaps even close to hundreds of thousands of dollars, to justify rejecting a $7000 alert system that could potentially save lives, well that’s just pure bloody mindedness.

If ScoMo wants to know where all the money is going … That’s where he needs to look – It will save them millions.  You do the maths!

I was a sucker. I watched Deaf Divide on SBS. I told myself that I wasn’t going to. I told myself that it was going to rehash old arguments that should have been settled long ago. But like a cat struck by curiosity I had to have a look. I cringed the whole way through.

We have been having these arguments since forever. Many years ago, this priest or brother from a deaf school in NSW went on a crusade. He went on radio. He went on TV. He was in the newspapers. He told whoever would listen that hearing aids were so good that there was no need for deaf kids to use sign language ever again -EVER!!

I was a fledging advocate back then. Encouraged by Damian Lacey, then CEO of the Royal South Australian Deaf Society, we launched a protest. Lacey allowed the Deaf Society to provide all the resources that we needed. The Deaf Society provided us with resources and printing materials so that we could design banners and posters. He provided Deaf Society cars so that we could transport Deaf people to the protest. 

The oral zealot, for want of a better term, was speaking at the Cora Barclay Centre. We timed our protest for his and parents’ arrivals. Of course, we championed Auslan. We wanted parents to know that this zealot was giving them false hope and we wanted them to see this vibrant, proud and active community in full flight.

It was vitally important that we were heard. Yet again some zealot who believed that hearing was the only way to exist was trying to undermine the Deaf community. Yet again parents, already struggling to come to terms with having a deaf child, would be given false hope in technology. Yet again, the Deaf community and its members were having to justify their existence.

That was in 1990. Thirty-one years ago. What the Deaf Divide showed me on Tuesday was that we have not progressed one iota since then! It’s easy to blame hearing people for the problems, but you know, Deaf people are at fault as well.

For every hearing zealot, you have a Deaf zealot too. These zealots are anti-cochlear, anti-hearing or anti-anything that is not Deaf. One mother on the Deaf Divide spoke of being spat upon by a Deaf person because she had chosen a cochlear implant for her child. We have all heard of the Deaf zealots screaming child abuse to hearing parents who have chosen to give their child a cochlear implant.  These zealots are every bit as bad as the hearing zealots.

I fully empathise with hearing parents who have a deaf child. For most of them it is the first time they have really had to confront deafness. They, mostly, see deafness as a deficit. Not being able to hear is something that they cannot comprehend. They need a lot of support.

We Deafies have to accept that hearing parents of deaf kids want their kids to be able to hear. Hell, there are even Deaf parents of Deaf kids who want their kids to be able to hear. Some Deaf parents choose cochlear implants for their Deaf kids too. They realise that being able to communicate better with the hearing community will be a benefit to their deaf kids. Even these Deaf parents have been subject to abuse from Deaf zealots.

The Deaf parents are also subject to abuse from hearing zealots. Doctors who tell them, “We are very sorry your child is deaf”. Professionals that ty to convince them from the very first day to give their child an implant. I have heard stories of Deaf parents being accused of child neglect for refusing to give their child an implant.  

What these doctors and professionals do is constantly make Deaf people justify their existence. They make it seem like that the choice to remain Deaf and let their child be Deaf is negligent. When hearing professionals insist, wrongly, that to allow access to sign language will impede speech development they are saying that sign language is inferior to speech, it isn’t.

It’s like a tug of war. The hearing world and the Deaf world each have one arm of the Deaf child and they are tugging the child this way and that. Meanwhile, parents of deaf kids, hearing and Deaf, look on in bemusement while the two factions fight over their child.

It doesn’t need to be this way. Look, we know that cochlear implants have benefitted many deaf kids. They speak better, they write better and their literacy is stronger. Dr Greg Leigh from Nextsense acknowledges this. Deaf kids now have access to spoken language in a way that they have never had before. This is a good thing because they have language, we should all rejoice.

BUT! As good as cochlear implants are, they are not perfect. Not all deaf kids thrive with cochlear implants. Deaf kids with cochlear implants can still struggle in noisy environments. Not all deaf kids with cochlear implants can miraculously talk on the phone. Deaf kids with cochlear implants still use captioning. Many enter adult life and experience social isolation in the hearing community and seek out the Deaf community. There is no one size fits all.

All of us in the Deaf community want these implanted deaf kids to learn Auslan. Many are being prevented from doing so because some biased hearing professional will tell their parents that Auslan will impact on their spoken language development – This needs to stop, it is unmitigated bullshit. Such misinformation from hearing professionals devalues Auslan and every Deaf person that uses it.

The Deaf community also need to realise that learning Auslan in a hearing family is hard work too. For Auslan to develop well it needs good language models. Parents and immediate family need to learn it so that the deaf child can communicate with everyone. But parents and immediate family take time to become proficient.

Trained Auslan teachers are in short supply. Parents in rural areas can’t get access. While there is no doubt that Auslan will benefit the deaf child there are barriers for its acquisition within a hearing family that need to be addressed. It is unrealistic to just expect hearing families and deaf kids to easily become proficient in Auslan when the lack of trained personnel and resources is a real barrier to its acquisition.

But all these issues are overlooked while the “Zealots” promote their own agenda. The deaf child and the parents, both hearing and deaf, are forgotten. The warring zealots are more interested in promoting their own agendas rather than working together for the benefit of the deaf child and their families.

That is what I saw watching the Deaf Divide. Just an enormous division that seems to have gotten wider with the years. It seems we have not learnt our lessons from the past and its time that we did. 

Cochlear implants are a good thing. Auslan is a good thing. Together the deaf child is on a good thing. Combined they have the potential to provide deaf kids with a strong language base and full access to education and employment. It doesn’t need to be one or the other. It can and probably should be both.

But it won’t happen if the zealots continue to war. It won’t happen if organisations promote speech and listening in their promotional materials but not Auslan. It won’t happen if the barriers to learning Auslan in a hearing family are not addressed properly. It won’t happen if hearing professionals continue to lie and insist that acquiring sign language will impede the development of spoken language.

Most of all it won’t happen if in 2021 we cannot learn from the mistakes of the past. This is equally true for both Deaf and hearing factions.  If the Deaf Divide taught us anything, it is that the deaf divide is as wide as ever. It doesn’t need to be this way. 

It is time for Deaf and hearing factions to come together and banish the divide. If we don’t these same arguments that existed 30 years ago will still exist 30 years into the future. It will be same shit, different barrel. We all owe it to deaf kids of the future to stop this happening.

I have two jobs. I have the one I am paid for and the other one which is mostly voluntary. In the second job I just help people who approach me. It is my pride and my curse that I am a well-known and respected advocate. What this means is that when people are in a difficult spot that they often reach out for help. 

This can be for many reasons. More often it is about the NDIS. The NDIS, as they do, make decisions that make no sense to anyone but themselves. So often someone will contact me to help them with their review. You know those Deaf plans with $3000 in them of which almost $1500 goes to a plan manager?  I help with heaps of reviews of these things. And get them fixed up. 

Sometimes I get paid for this, sometimes I do not. Payment is not that important. The important thing is making sure that the people who contact me get the support that is rightfully theirs.

In the last month I have been contacted to assist with quite a few things. Like the LAC who won’t contact the Deaf mother who is the primary carer of her son because it’s easier for them to call and talk to the father rather than correspond by email. Or the woman that got told by Hearing Australia for nearly three years that her hearing aids were fine and that she needed a cochlear implant. Only to find out that her aids had not been adjusted properly. She visited a private audiologist who adjusted her aids properly, so much that she scored 99% on a word recognition test (true story, and she went four years telling them something was wrong with her hearing aids, but they refused to believe her.)

I help with these things. I use my networks and knowledge of legislation and complaints processes. Mostly things are just voluntary because the system and people within it just piss me off. You cannot just leave people hanging.

It gives me a great deal of satisfaction to help people and to get good outcomes for the people that ask for help. I wish that I could tell you that it’s all warm and fuzzy, but its not. Often it is triggering.

I am deaf. I am discriminated against too. I have been victimised at work. I have had to fight for interpreters at university. These fights for my own equal rights and fairness leave scars. What this means is that when I assist people, paid or otherwise, their issues often trigger past trauma within me.

Last week I met a man who was on stress leave from work. He is deaf and has not been treated well. He is hugely qualified and skilled. But at work they undervalue him. They give him breadcrumbs. Menial work that no one else wants to do.

They exclude him. Don’t include him in team meetings. They don’t ask him for his views or his ideas. They rarely talk to him or show that he is valued. Often, they will say things to him like that he should lipread and doesn’t really need any extra help through Auslan interpreters. In short, they marginalise him.

I suspect that a lot of this is because people cannot accept, don’t want to accept or can’t be bothered to do the things that will make this man feel a valued member of the team. They think that to include him and really utilise his talents would be too much bother. I suspect that they half hope that he will go away. Resign and move somewhere else so that he is not their problem.

What they are doing to this man is hugely demoralising to him.  He has high absenteeism because his confidence is shot. Instead of trying to assist the man and find out what is really the issue they blame him, pressure him and refuse to accept responsibility for their own actions.

And you know he has no leave left and no income. He is in the middle of a workcover claim that can take many months to resolve. In the meantime, not only is he stressed from how he is being treated but he is stressed for his future. How will he pay for his house, support his family and so on?

And when you talk to him, he tells his story again and again. He knows he has already told you, but he ruminates. He cannot get it out of his head. As he tells the story he gets anxious. He breaks into a cold sweat. His eyes are wide and he looks around him like a startled rabbit.

At my last meeting with him I asked him if he cried often. Right there and then he burst into tears. He cries in private, cannot even tell his wife. Denies anything is wrong. He won’t consider medication because that will mean he is weak.

Part of my helping him is to help him to accept that he has depression. Part of it is to help him get the right support, the right counsellor and to heal. It is only then I can assist him with his workplace issues.

All of this is hugely triggering for me. I am sure there are other advoctes who experience exactly the same thing, triggers. Part of my being able to help this man is because I have been there.

I worked at a place that under-valued me. I worked at a place where managers committed to do things but would not follow through. I worked at a place where managers refused to respond to emails and follow through with promised actions that they had agreed to. You know, it was always my fault, no one would accept that the managers were behaving in a way that made it impossible to do my job.

When I was assisting this man I had huge flashbacks. I began to hyperventilate; my chest began to constrict. My body became tight and ached. I began to sweat. It took all of my reserves to hold it together.

I write this, not for any sort of sympathy, I write it so that people can be aware of how their behaviours impact on others. We live in an enormously audist world, where people who are deaf have nearly all the responsibility to fit in. 

People who are deaf, indeed most people with a disability, have to do all the adjusting. The have to jump through hoops to get support from the NDIS. They have to jump through hoops to get Australian Hearing to accept that their hearing aids are not working.  They are excluded because it’s easier to talk on the phone rather than adjust one’s own behaviour to create an inclusive environment. They are blamed for anything that goes wrong at work. 

And all because of an audist and ableist society that refuses to change. Some do and that is great but all too often ableist and audist people make it OUR fault because they are ignorant and, in many cases, just cannot be bothered.

And every day they trigger us. They cause us stress and exclude us because we are not like them and they think we should be.  This is why mental health issues are higher among people with a disability than others … And the behaviour of this ableist and audist society makes us sick! You don’t believe me?  Read this –

https://www.cdc.gov/ncbddd/disabilityandhealth/features/mental-health-for-all.html

It’s not fair, Australia needs to do better.