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.