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!

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.

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.