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.

Well Done Us!

Picture shows a painting of the landing of the First Fleet. In the background is the bay and a boat. A group men are raising the England Flag

So Australia Day has been and gone. There were the predictable protests. So there should be because if you are one of Australia’s First Nation People it would be extremely offensive. For it was on this day that Australia was settled by white people.

On this day the culture of our First Nation People was attacked and in many cases destroyed. Some of the culture remains but how much of this rich and diverse culture spread across many Aboriginal Nations has been lost forever. Australia’s First Nation People were systematically abused, killed and some communities wiped out altogether.

I spent the Australia Day in the Riverlands last week. I was on traditional land of the Merv People. I was at Lake Bonney and I saw not one Aboriginal person. Just lots of white people with Australia Flags tatooed on their cheeks. The Whiteys were having a grand old time and that is ok. Later for reasons I will not elaborate I found myself supporting a family member in hospital. It was there I saw a young Aboriginal girl receiving treatment. I found that sort of ironic.

I’m all for celebrating Australia Day. But it has to be on a day that is not so offensive to our First Nation People. It also has to come with it an acknowledgement of the harm white people have done to this magnificent group of people and cultures. It also needs to come with it a real desire to fairly repartiate and reimburse our First Nation People for the harm and plundering they have suffered at the hands of white people. I fear this will not happen in my lifetime. To me SORRY just does not cut it!

I am no expert in Aboriginal and Torres Strait Islander groups. In my work I always use a cultural broker. The broker introduces me to the communities and arranges permission for me to work with the communities through the community elders. It is not much but it is just a little thing that I can do to show my respect and provide the communities with some control over the support that I may have to offer. I have worked directly with a number of young Aboriginal people. I was shocked recently to discover that one had been in jail. She is a kind and gentle soul. It is to her that this article is dedicated.

Let’s go back almost 20 years ago now. My wife obtained a job as a visiting teacher for the Deaf in the Northern Territory. Part of her role was to support deaf kids in towns and also in remote Aboriginal communities. I took a career break of sorts. I became a house-husband. It was not for long, however, because I was asked to support some young deaf Aboriginal people at school. I was basically their school support person. Or should have been.

I supported two deaf Aboriginal  students at the local high school and one at the primary school. I basically became their teacher and interpreter. Yeah I know! Me interpreting? Talk about the blind leading the blind. But resources were short, funding was short and skilled people even more so.

Each morning when I arrived at the school the teachers would basically give me the students lessons, send me into a break out room and I then taught them. I was supposed to be supporting them in the classroom. It did not work out that way. I became their teacher. I have half a teaching degree so I am not without skills but it is still not right. During the week I went to sport and other events with the students and became their interpreter of sorts.

One day I supported a very young boy at reading. He became quite animated about the story that was being read. It had pictures of unusual animals. When he saw the pictures he would jump up and down and screech with joy. He lacked the language to ask questions and it was his way of asking,  “What’s that?”

It was a brilliant opportunity to build his language. Talk about the fluffy nature of the fur, the over large nose, the enormous fangs and bulging eyes. Size, shape, verbs and adjectives could have all been taught. Instead the teacher removed the child from the room because she felt he was distracting the class.

Another day I was working hard with a student to teach her the basic concept of fractions. She was 17 years old and had no idea. I later found out that for many years, because there was no proper support, that she had been given a colouring in book and sent to the back of the class on most days. She was basically left to her own devices. She didn’t like being pushed to learn but I stuck with it.

While I was teaching the boss visiting teacher of the deaf came into the room. The student was close to tears and throwing a minor tantrum. I explained to the teacher that she was making great progress but was frustrated. What happened? The visiting teacher sat the student on her lap, cuddled her and wiped away her tears. This is a 17 year old. She then admonished me. Told me to stop wasting my time because, and I quote, ” …she will never need to use this stuff, she will just get married and be based at home and in the kitchen.”

I also assisted a young teenage Aboriginal man at the local boarding college. He was deaf and from a remote community. I went out to the college once a week to help him with his homework. The college was established to educate young people from Aboriginal communities. It is of no surprise that it was run almost solely by white people. Each evening I would arrive to find the students marching, I kid you not. They marched from dinner to what I assumed was some kind of roll call.

My job was to assist this 13 year old deaf Aboriginal lad to do his homework. The problem was he was functionally illiterate. He could not read his homework, let alone complete it. He was also severely language deprived. I don’t know what happened during the day in class. I assume he probably just sat there. Doing what is anyone’s guess. My observation was that no-one could communicate with him.

He was really bright. After a few sessions I realised that the homework was really a waste of time. What we did was talk. With his rudimentary home signs he managed to tell me bit about his family.  I can’t remember fully now but I recall he had younger siblings.

He would tell me how when he went home he would drive cars on his community land. He would mime and gesture to me how he would drive them fast, do donuts and skid. Through these conversations I taught him some basic Auslan signs. I taught him signs for his family like mum dad, brother and sister. Interestingly he had his own home signs for his family. I taught him signs relevant to driving like slow, fast, brake, turn. skid and so on. I only worked with him for a few weeks before I got a job in Ballarat and left. I do not know what became of him.

There were four young deaf Aboriginals that I worked with. It is true to say that they were all language deprived. The last time I saw one of them was in 2005.

Then a few weeks ago, out of the blue, I got a Skype call. An Aboriginal colleague had met one of the young women I worked with. My colleague reminded the young deaf woman of my wife and I and called us on Skype. The young deaf Aboriginal woman is a beautiful soul. Tall and regal with a stunning smile. When I supported her she would bring me food from her community to try. Things like goanna and kangaroo tail. She would giggle uncontrollably as I tried to eat the kangaroo tail. It’s tough.

Imagine how shocked I was when on my screen there she was. Still tall and still regal. Her smile still beaming. Perhaps little more rotund and I noticed a hint off grey in her hair. Her reaction to seeing Marnie and I on screen was a joy to behold. I couldn’t talk long as we were in the car at the time and I was driving. Marnie later told me that the young deaf Aboriginal woman had been in jail.

I got a hold of my colleague who was working with her. It seems that the young deaf woman had been living in fear somewhat. She had been startled by someone. I do not know who. She had reacted aggressively and assaulted the person who had startled her. Somehow this led to the police being involved. Courts became involved and the young deaf woman ended up in jail.

The problem was that when the young deaf Aboriginal woman was tried in the courts there were no interpreters. I am not sure how helpful a straight Auslan interpreter would have been. She probably would have benefitted from having my colleague present. My colleague knows community signs and Auslan. Either way she needed communication assistance. She received nothing.

She did not know what was going on and was not given an opportunity to explain what had happened. If she had been given an opportunity she would not have been able. She was not able to adequately defend herself. Nevertheless, she was made to endure the court process and ended up in jail. It must have been terrifying for her. Make of that what you will.

And you know this is not uncommon. Luke Pearson, writing at @indineousx had this to say about Aboriginal people in Jail. 

” …..Indigenous incarceration rates sometimes go up to as high as 100% in individual prisons, even though we represent 3% of the population .. “

Imagine that? There are some jails in this country where every single prisoner is an Aboriginal person.  Pearson notes that these Aboriginal people are,

”  ..often dealing with issues of FASD, severe hearing loss, intergenerational trauma, or abuse at the hands of the state….”

For those that do not know, FASD is Fetal Alcohol Spectrum Disorders. We know from statistics that up to 85 % of some Aboriginal populations have a hearing loss due to poor health care. We know that systemic abuse and breakdown of Aboriginal communities has resulted from abuse and dispossession at the hands of white people. If the Stolen generation was not enough we are now jailing Aboriginal people with disabilities and putting them through courts without any support or means for them to defend themselves.

This is happening today in our country. It is all indirectly related to that fateful day when Britain settled Australia with convicts in 1788. And we celebrate it!

Well done us. Well done indeed!

Fixing the NDIS – The Real Story!

The NDIS has been accused of causing deaths.  Nearly 1300 of them actually.  Predictably the news has caused a media frenzy. On the Today show Karl Stafanovic expressed his outrage. Everyone and his dog is calling out the NDIS for the mess that it is. The Minister has gone into defensive mode claiming that linking the deaths solely to the NDIS is inaccurate and nowhere near the truth. To counter the bad publicity the Department have begun to release information about the so-called NDIS Overhaul.

The Minister is probably right. The NDIS are not responsible for all of those deaths. Some of them probably would have occurred whether the NDIS was in place or not. Some of them possibly occurred because the NDIS was to slow. For the latter, even one is too many. The point really is that the NDIS is an inefficient beast. The Government has known this for some time and has been investigating. I have no wish to blame anyone for the deaths but if anything good can come from the media frenzy it is that it has made the Government work faster and be more transparent about the reforms that are needed within the NDIS.

NDIS Minister, Stuart Robert, has been forced to acknowledge that the NDIS simply has too many flaws.  Among other things He has admitted:

And the list goes on. The Minister tried to defend the NDIS and stated that access decisions now took an average of only four days. This may well be true but an access decision is just that. A decision, it does not start support, it does not implement support and It does not provide support. It just states that someone is eligible. The average wait time for a plan is said to be 121 days. It can take up to four months. In South Australia the situation is worse with 210 days being the average wait time and 152 days for kids under six.

These figures are bad, but the situation is actually worse. I worked within the scheme for over three years. When the NDIS works it’s great but the ineptitude of the system causes great harm and delays that are even longer than the official figures.

Access decisions are said to take four days. This can be a yes or a no. If no, the person can appeal. And the appeal might convince the NDIA to overturn the original access decision. I have assisted people to appeal their original access decision. On more than one occasion it took more than a year to get an answer. I once assisted a 62 year old lady with Multiple Sclerosis appeal her decision. She had applied and was refused. Not disabled enough apparently.

She came to see me because she had no idea how to appeal. It’s a complicated process and requires the person to provide evidence as to why the original decision was wrong. This means further specialist appointments. It means reports. It means money. It means stress. It challenges ones dignity. And it means time.

Then the appeal has to be submitted. It needs to be reconsidered. A decision needs to be made. A decision is made and a letter sent out. If the decision is again no the person can chose to give up or go around again.

Now let’s consider the participant with Multiple Sclerosis that I assisted. She had an official diagnosis of MS. She tires easily. Uses a walking stick. Struggles to clean her home. Requires maintenance and therapy to maintain functioning. She needed a whole heap of stuff. But the NDIS said no. In their view she was not disabled enough. Basically they are telling her when that when she is at a point where she cannot help herself that the NDIS will help her.

This is plain stupid. Surely the approach should be to assist this person to maintain functioning for as long as possible and not wait to the point where they are ready to keel over? It took this lady over a year to get access. She got access but at what cost? In that time her condition was detriorating. This is the rigidity of the Scheme and its processes. It does great harm. Don’t be fooled by the Minsters claim that access decisions happen in four days. They might do, but that is just the beginning of the story.

Four days to decide yes, well done NDIS. What next? You then refer to the appropriate region. A LAC or planner is allocated.  A phone call is made to set up a time for a planning meet. If you are lucky enough to be deaf they will call you anyway. Even if your file says text or email. After the third call that the poor deaf person does not answer they send a cannot contact email. Delays the process even further. Yes, this happens regularly and the NDIS know about it.

To set up a planning meeting you have to agree on a time to meet. More importantly you have to hope you are available to take the call. The whole process of setting up that initial meeting takes time, a long time after the four day access decision.

It is the same with reviews. The set up of plan reviews takes time. Participants are supposed to be contacted three months before their plan expires to set this up . Often contact cannot be made. Often times cannot be agreed. Often plans are near expiry or expired before a review meeting happens. You can’t blame the NDIS for all of this but. Life gets in the way. It adds to the complexity.

You also need to factor in, particularly in new roll out areas, many people that have applied have to wait. This is because the new roll-out areas focus on people in defined programs. That is people already receiving State Government support. You see the State Government want these people off the books. They want them over to the NDIS books as soon as possible. Ok, I am being cynical a bit. They do this because they want continuity of support. So they focus on defined programs first.  If you are not on a defined program the wait can be even longer.

So let’s say the access decision happened in four days. It took six weeks to schedule a meeting. The meeting might be two, three weeks after the initial phone call. Thats two months from the original access decision, if you are lucky. But it doesn’t end there.

The initial meeting happens. If there is not enough evidence the participant will be told to go get more evidence. Sometimes Local Area Coordinators submit plans and then NDIA delegate says there is not enough evidence. So for the participant it is back to the therapist or back to the Doctor. Add a month, add six weeks or even longer.

There are a wholee range of scenarios that will delay plan approvals. This includes workloads and, yes, ineffective workers who are just not up to the job. There is also the issue of the NDIA being understaffed. For a whole variety of reasons getting plans approved quickly can be a lottery. One must remember here that LACs cannot approve plans, only write them – the approval comes from the NDIA employed delegate. An NDIA that is chronically understadffed.

Now the plans approved. You have too activate. You have to have the implementation meeting. You have to book services. You have to set up service agreements. You have to learn the portal. If you have support coordination, find one to help you set up the plan. Plan management too if you have it. Often there are waiting lists so that your plan does not start until nine months after approval. You might also get a crap support coordinator, and there are many, that delays things even more.

Then you have participants who have no clue what to do. You have LACs and planners who don’t follow through with implementation. You have thousands upon thousands of participants with money and support who don’t spend it simply because they do not know how.

You want to know why the NDIS has an underspend? Understaffing is one reason and the other is that participants with plans not used simply because the system is too complex and they don’t know how. Then you have over worked LACS and planners who can’t keep up with implementations. Sadly, you also have LACS and planners who are simply slack and not doing their jobs properly.

Let’s not mention quotes for assistive technology. Assessments that need completing. Quotes that need approval. It’s true that despite the NDIS best efforts people have been waiting up to three years for their assistive technology. Then the NDIA will bicker. Too expensive, above standard, need Technical Advisory Team approval. Quotes are wrong. lost, not processed – Yup a total shambles all round.

Then you have underfunded plans. Poorly written ones. Clueless LACS and planners who put the wrong things in plan. Or there are those delegates who see themselves as primarily keepers of the public purse and make cruel and often illogical cuts. Cue the review – Let’s not go there except to say it takes a very long time.

So Ministsr Robert – Thank you for cutting access decisions to four days. But quite honestly it doesn’t help all that much The real story is in the process. The real story is in the legislation. The real story is in the inexperienced staff making illogical decisions. The real story is NDIS staff not understanding that investment is about spending money to ensure quality outcomes. A cheap plan is often a bad plan and poorly spent money at that. The real story is about the Government investing in the NDIS with quality and experienced staff so that it can operate effectively.

And lets. not forget a fit for purpose computer system, hooo boy! Whats the most commonly heard scream in the LAC or NDIA office?  “Fuck! The CRM’s down!”

Minister Robert I thank you for trying to sort out the NDIS. I fear that the measures you are announcing only scratch the surface. There is much, much , much that needs to change if the NDIS is to be the program that it is meant to be!

 

Deviants and the Devalued – Why SRV has no place in the NDIS.

I outed Social Role Valorisation last week. I suggested that Social Role Valorisation and Normalisation had no place in any program or policy based on human rights. I suggested the NDIS was about choice and control and making a program about having choices that only the mainstream will value and accept is not person centred. I suggested that decision making based on having people with a disability conform with the norm and have a valued role that others will admire has no place in a program based on human rights.

For my efforts last week I was patronised by some people. They claimed that I didn’t know what Social Role Valorisation was. I didn’t understand its value and influence on policy direction and program development. Horrifyingly there are actually people that think Social Role Valorisation and Normalisation still has a place in today’s world. I shudder that there are still people in high up areas that think it does.

The history of Social Role Valorisation lies in Normalisation. The concept of Normalisation supposedly has its roots in the 60s and 70s in Scandinavia. Let me offer you some quotes from academic papers that explain what normalisation is. Initially normalisation  “…was first applied only to mentally retarded people. Its 1969 formulation by the Swede Bengt Nirje called for “making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.”

Clearly the scope of normalisation was to make “The Retarded” (Yes I know) as much like people in mainstream society as possible. Now the noble premise of Normalisation was that people who had disabilities and were supported and educated in institutions did not lead happy lives. The noble aim was that people with a disability should be part of mainstream society because institutions were, “..congregating together large numbers of people with all sorts of maladaptive behaviors; located in bleak settings far from their families or any population clusters, with barren buildings and virtually no meaningful or productive occupation for their residents. The people who lived in them ended up virtually cut off from ordinary society, and often died there in obscurity.”

I won’t dispute that. That still happens today. But not just in institutions but in society generally. That’s why we have a Royal Commission intro Neglect and Abuse of People with a Disability. Sadly it happens everywhere. As you can see from todays headlines that are alleging deaths because of NDIS ineptitude, bureaucratic negligence also leads to death of people with a disability.

But back to Normalisation. Apparently academic Wolf Wolfensberger got a whiff of what was happening in Scandinavia. He decided to go see for himself. The idea of Normalisation appealed to him.  He took the Scandinavian model and applied it to any group of people he deemed as “deviant” or “devalued”.  Yes, these are the words he used. His framework for policy and program development promoted the, “Utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are as culturally normative as possible.”

Now you can package this anyway you want but clearly old Wolfy felt that the key to assisting “deviants” and the “devalued” was to make them, in his words, as ” .. culturally normative as possible.” Integrate or assimilate are other words that come to mind. Make them normal, like the norm, like the mainstream. Take your pick.

Wolfsenberger’s introduction to Normalisation led to him developing his theory of Social Role Valorisation. (SRV) His theory of SRV applied to any group of people that might be seen as “deviant” or “devalued”. In Australia that could be disability, Aboriginal and Torres Strait Islanders, the unemployed, refugees, people with mental health issues – Take your pick. Say this with me, and say it loud – “Deviants” and “Devalued” need to be as “Culturally normative as possible.”

Ok, now there are people that say SRV is not Normalisation. Rather it expanded and developed Normalisation to apply to a wider group of “deviants” and “devalued” So SRV is, ” …the notion that the good things any society has to offer are more easily accessible to people who have valued social roles. Conversely, people who have devalued social roles, or very few or marginally valued ones, have a much harder time obtaining the good things of life available to those with valued social status. Therefore valued social roles and the positive status that typically attends them are a key to obtaining the benefits inherent in any given culture.”

I could be wrong but this reads suspiciously like Normalisation dressed up to sound a bit more clever. Yes, I know the reader has already gathered what I think of Normalisation and SRV. I think it’s horrible. It’s patronising and it’s condescending. Worse, I think it promotes an ideal that there are elements of society and people that are better than other elements simply because they’re “normative”

People will have you believe that Normalisation and SRV are fairly recent ideas. I am here to tell you that they are not. I am going to tell you a story of the neglect and abuse of people who are deaf that has its origins back in the 19th century. You will see at the end of this story, hopefully, that Normalisation and SRV should be confined to the scrapheap. More importantly, I hope you will see that they have no place in guiding policy of the NDIS.

Did you know that Alexander Graham Bell was one of the first practitioners of Normalisation? Did you know that he actually invented the telephone while trying to invent a machine so that his deaf wife could talk properly? He actually invented a machine that could turn a dogs bark into words. He also wanted no deaf people in the world and wanted laws that would prevent deaf people ever marrying. Deafness was “deviant” you see. Breeding little deaf babies …. Please no!   “…Bell feared “contamination” of the human race by the propagation of deaf people even though most deaf people statistically are born to hearing.”

Deafness, you see, is abnormal. It is not a cultural norm. Not to be encouraged. Said the grand old Bell, “Those who believe as I do, that the production of a defective race of human beings would be a great calamity to the world, will examine carefully the causes that will lead to the intermarriage of the deaf with the object of applying a remedy.”

Now if by some chance deaf people should come into the world, a tragedy that it may be, they had to be Normalised. They must not use sign language. For that would stop them speaking. They needed to speak. Because that was what most of us do and is culturally normative. SPEAK and you shally succeed. Indeed this is what he said of sign language … “ … essentially a foreign language” in an English speaking country like the United States, the English language, and the English language alone, should be used as the means of communication and instruction at least in schools supported at public expense.” Now go back and read the definitions of SRV and Normalisation – Does it ring any bells?  ( No pun intended)

This was the mid to late 1800’s. At this time, from what I understand, sign language was prevalent. It was used in education. There were deaf schools. Deaf people did all sorts of jobs. They were lawyers, teachers doctors and the like. They were just part of the landscape. Bell and his advocates for Normalising deaf people destroyed that. The famous 1880 Milan conference on Deaf education decided to ban sign language and use only oral methods. Normalisation was the policy directive and advocates of sign language at the conference were ignored. Our friend Bell was prominent at this conference. In fact – ” ..Bell spoke for three days while advocates of American Sign Language were only given three hours to argue against oralism.” 

What this began was a horrific set of programs that attempted to make people who are deaf as much like hearing people as possible. It was speech at all costs. Speech was valued. English was valued. Those Deaf that spoke well, wrote well – just like hearing people – were more likely to get access to all the good things that hearing people do – ( Yes I did just paraphrase SRV principles.)  But what really happened?

Language deprivation happened, that’s what. And by the thousand, nae the millions, deaf education systems the world over churned out deaf kids that were language deprived. Advocates of oralism would wheel out their success stories. What they would not tell you is that these “success stories” likely had a fair bit of hearing that assisted them to learn to speak. The ones who oralism failed, they were left hidden away. This meant for nearly a hundred years many deaf kids were deprived of language and opportunities.

Yet even though the evidence mounted that oralism was failing many, they persisted. They punished children that signed. They caned them. They made them sit on their hands. And what they achieved was a generation of language deprived and largely illiterate deaf people.

Deaf people the world over protested. They let people know how isolated they were. They let people know that this dominant hearing people ideal was messing up deaf people. The evidence was there for all to see . Low attainment. Poor literacy. High incidence of mental health issues. But the dominant hearing group needed to fix these “deviants”. Instead they ruined a large proportion of them.

In Britain they had this to say in the 1970’s – “…They also felt the oral approach led to the assumption that deaf pupils would integrate easily with the dominant hearing population on leaving school which was misleading and a source of concern for many parents. They were also disappointed at how little attention had been paid to the evidence of deaf people themselves and their feelings about the ‘severe limitations of their oral upbringing’. (British Deaf and Dumb Association (1970) Report by a Working Party of the British Deaf and Dumb Association formed to study and comment on ‘The Lewis Report’; The Education of Deaf Children: the Possible Place of Finger Spelling and Signing. ”

The deviants, the deaf people, needed to be assimilated with the dominant. Only in this way could they be properly valued. See the theme. It’s almost Normalisation and SRV to a tee. Its been around since forever. It has caused great damage since, well forever.

Look, I get that institutions were and can be a bad thing. I get that in the past there was an out of mind out of sight approach. I get that institutions were bad, poorly run and centres of abuse. But I also know that mainstreaming, that wonderful tool to implement SRV and normalisation, failed many. Far too many.

Why? because the support was not adequate. Why? because for many just being there in a school like everyone else was the ideal. It didn’t matter if Johnny and Jenny sat on their own in the playground. It didn’t matter If Johnny and Jenny sat in a classroom and generally understood nothing.

It didn’t matter that if in adulthood adult 24 year old Jill went for walks with a senior citizens group, was given lollies and no-one ever spoke to her. Goodness Jill was with the mainstream, isn’t that a valuable thing? It didn’t matter if evidence showed that educational attainment in mainstream settings was low. This was ignored because being in the mainstream – was valued by society. Just being there meant they were more valued by society.

Crap. Just like with those old time institutions they were largely out of mind and out of sight. Support was inadequate and arguably worse than in specialist settings. Social interaction for many did not exist and the damage the isolation in this “Normal” setting caused has never really been measured.

And you know what? The Deaf people, so badly treated in the name of Normalisation and SRV based policy, later discovered the Deaf community. Some of them began to learn to sign. They made friends who were Deaf. But for many the language deprivation that they experienced at the hands of oralism was permanent. While the ability to sign improved their interaction they still had the literacy of a grade three child. They still couldn’t fill in forms. They still couldn’t compete for work with others. If they did work it was generally manual labour. Not all of them but thousands upon thousands.

And the cheek of the hearing populace was to use these people who were introduced to signing much later in their life as an example of why using sign language with deaf kids was bad. Yup, that’s what they did.

So to all you people reading this who think I don’t get SRV and Normalisation, let me tell you that I do. I get it in a way you will never fully understand. And get this. It’s not new. It’s been around since forever. All Wofsenberger did was make it seem clever. It isn’t. It’s just a pompous idea that tries to fit everyone into one basket. It needs to be confined to the annals of history.

All that I ask is that society just start to value people for who they are. Value their choices and support them accordingly. Sure, if the choices are damaging to others there is a limit. But let’s create a system of support that values people for who they are and not promote an idea that they will be more valued if they conform with the majority values of others.

Deviants and devalued – That says it all. It has no place directing NDIS policy.

The NDIS Heroes, or Are They?

I worked in the NDIS environment for over three years. I was a hero. I was told so all the time. Not by participants but by the bosses above me. You see the motivation for us was that we were helping Australians with a disability live “ordinary lives”. We were helping Australian’s with a disability to be part of our society. We were making them happy. We were making them more whole. For our work, either as a LAC or a planner empowered Australians with a disability. WE WERE IT, without us Australians with a disability would be NOTHING.

Ok! I am exaggerating a little bit. Just a little bit though. But I am not kidding when I tell you that one of the key catch phrases was empowering Australians with a disability to live ordinary lives. Empowered and ordinary lives were mentioned often. I mean, for fucks sake, a group of us actually had to sit through a week long training session that centred around Social Role Valorisation, aka normalisation. And it was endorsed by and funded by the NDIA. I didn’t make myself too popular by suggesting that the way we could prevent Johnny with spina bifida getting his feet sunburnt was to either buy him sunscreen or buy him some kneecaps (Get it?) It was an actual case study, I kid you not. My attitude and flippancy was part of my disgust at having to sit through such drivel and insulting training.

Now let me say this now. Any person working in the disability sector who thinks their role is primarily to empower people with a disability has got it wrong. Any person that thinks the NDIS is responsible for assisting people with a disability to live “an ordinary life” doesn’t get disability, or even life for that matter. Any person that still follows or endorses Social Role Valorisation (SRV), please stop.

Let’s remind people what the basic idea of SRV is. The root of SRV suggests that, ” ….good things any society has to offer are more easily accessible to people who have valued social roles. Conversely, people who have devalued social roles, or very few or marginally valued ones, have a much harder time obtaining the good things of life available to those with valued social status.” Let it also sink in that I have copy and pasted this from the International Social Role Valorisation Association website.

Consider this concept of Ordinary Lives – What it basically means is that a person who does the things in life that we consider “ordinary” is more whole and more valued. So if a person works, that’s good, they are more valued. If they earn a good wage, they are more valued. If they do things considered ordinary like catching a bus, socialising with people, partaking in activities they are more valued. The normalised person is more valued.

Now let’s consider empowering someone to live an “ordinary life”  This is what we were often told was our role in NDIA land. This was one of the key motivational catch phrases in the NDIA. The basic principle of our job was to make sure that Australians with a disability are as NORMALas possible. Because the concept of ordinary in this case is NORMAL.

Empower means to give power to.  It means that I as the NDIS person have power to ensure Australians with disability can be NORMAL as per the idea of Social Role Valorisation. I am like a light switch, I turn that power on or off at will. This is my problem with the word empower in a human services framework, mainly that it assumes that the power is mine to give. It is not. I will come back to this.

Firstly let us consider what society considers ordinary, particularly through SRV eyes. It implies that a person with a disability will only ever be valued if they are doing the things in life that others value. So if you walk, you are more valued. If you hear you are more valued. If you see you are more valued. If you work you are more valued. If you pay tax you are more valued. You get the gist? And simply by striving to make people with a disability as ordinary as possible we devalue their very existence. It is a truism that many in society consider that without these NORMAL things people are lesser beings.

Now I know people that promote SRV don’t necessarily feel this way BUT when you promote a concept of normalisation that is what happens. That is why people cry tears of joy when little Sally walks for the first time but get sad when she chooses later to use a wheelchair because its less painful and easier. That is why its wonderful that Peter can hear something with his cochlear implant but tragic when he decides he preferred not hearing at all to the sound that the Cochlear implant provided him.

That is why people with a disability who find it hard to gain or be employed, through no fault of their own, are considered burdens. The very concept of “ordinary” as promoted through SRV and many within the NDIS devalues disability in any shape of form because it considers the state and life of a person with a disability as not normal. And this is why SRV and the concept of “ordinary lives” revolts me so.

I would love the NDIS and all human services to stop using the term empower. Power is not any ones to give. Everybody has power. The problem is that our society often takes it away through poor design and condescending attitudes. Aboriginal and Torres Strait Islander people are a prime example. The whites, the normal ones, consider Aboriginal and Torres Strait Islanders as not normal and troublesome. We think it’s our role to fix them and control them so that they don’t harm themselves. So we give them welfare cards so that they can’t buy alcohol. We are better you see, much better than them. Or so we seem to think.

But we think we are empowering them. We think we are empowering them to take control of substance abuse and social issues in their communities. They can’t do it themselves so we will do it for them. It is for their own good you see. We the heroes!

People will hate me saying this, but a similar attitude exists within the NDIS. Thats why they use terms like reasonable and necessary. Thats why a key platform of the NDIS is value for money. That’s why the NDIS has a a Typical Support Package and one must justify with oodles and oodles of evidence if ones needs should be above the Typical Support Package. Thats why they have a standard price of around $ 8500 for a manual wheelchair. If the price is over that then the person with a disability must jump through hoops to prove the need. For people with a disability there is no dignity, there is no power

That’s why the NDIS will only provide standard hearing aids and hardly ever approve hearing aids above that standard. Thats why they have patronising ideas such as parental responsibility and take it upon themselves to decide what these responsibilities are rather than provide appropriate support. That’s why they deny Auslan to families because they have speech therapy and they consider that is enough. They dictate and control.

Yes, the power is entirely with the NDIS. They can chose to provide it or take it away as they see fit. They can switch it on and off like a light switch. All in the name of sustainability of the scheme. That’s what EMPOWERING in the land of the NDIS is about. It is deciding what someone can and should have. When they say YES they have empowered those lovely people with a disability, What saints they are. When they say no, they have empowered them too because they have ensured the sustainability off the scheme for generations to come.  (Read this with dripping sarcasm.)

This is everything that is wrong with the NDIS. I am here to tell you that if you are working for the NDIS you have been EMPOWERED by people with a disability not the other way around. That car you are driving, that house you are paying for, that holiday you are having or that fine wine you are drinking tonight is because of people with a disability. Without them where would you be?

I am here to tell you that it is obscene that the CEO of the NDIS is earning$700 000 a year while the NDIS quibbles over the cost of a hearing aid or wheelchair. I am here to tell you that the Chair of the NDIS Advisory Board earns more in one year than many people with a disability get in their plans over five years.

I’m here to tell you that that support coordinators, that technology providers, that support workers, that wheelchair mechanics or that plan managers have a business because people with a disability exist. I am here to tell you that thousands of people that have a job and an income do so because of people with a disability. I am here to tell you that they are the SERVANTS of people with a disability. They do the bidding of people with a disability, not the other way around.

I am here to tell you that the NDIS was set up based on human rights. Human rights that people with a disability already have.  BUT because of non disabled and their neglect these human rights have been denied.  I am here to tell you that the NDIS is an investment model based on investing so that people with a disability are able to participate in the community as they see fit. Through that participation they are creating business and dollars that ultimately will pay for the NDIS and some.

It is not the job of people that work in the NDIS or the job of people that support people with a disability through NDIS money to tell people with a disability what life is ordinary. It is not the job of the servants within the NDIS framework (the LACS, delegates, team leaders, support workers service providers etc .. ) to tell people with a disability just what rights they have and decide what is appropriate for them. Your job is to serve, to listen and ultimately do what is needed for people with a disability to achieve their goals and partake in society in whatever way they wish. That is their right, just as it is the right of every other human being,

In short the power imbalance is wrong. The real bosses of the NDIS are people with a disability. Everyone that earns money and makes a living through the NDIS does so at the the will of people with a disability. Remember that and remember where the real power lies. Then just maybe, just maybe the NDIS will achieve what it was established for!

You aint no heroes. You are there to serve.

 

 

Neglect and Ignorance.

Sco Mo was on TV today. Australia is burning so he tried to lead. Fires happen apparently. Lightening, arson, random sparks and the like. It’s unfortunate said Sco Mo.  Meanwhile the crickets on. Let’s not forget the brave cricketers entertaining us and distracting us while the country burns. I am not really sure how much of this is actually right. You see Sco Mo spoke with no captions or Auslan interpreters. That’s what I heard anyway. I saw a bit of it on Facebook, no captions nor interpreters. My friend Kelly gave me the gist of what he said. I wish she hadn’t. There can be very few leaders in the world as ignorant and lacking in empathy as our Sco Mo.

It reminded me again how far Australia has to go in terms of disability access. A friend contacted me today and asked me if I would be making a submission to The Royal Commission into the Abuse and Neglect of People with a Disability. I pointed out that I had not really been abused. He reckoned that the neglect that we people with a disability experience on a daily bases, at the hands of ignorant able bods, was akin to abuse and that the Commission should hear about it. I am not sure if that is their remit but he had a point.

I mean a few years ago I was working in a job with a local council. In the Council they have an emergency services manager. This person’s job is to respond to natural disasters like bushfires and get the community prepared and ready. They do this in many ways. Through town hall meetings, radio announcements, videos, letterbox drops and the like. They develop a response plan to disasters. I looked over the plan and pointed out that there was no mention or consideration of people with a disability.

There was no plain English information for those with learning disabilities. No large print information for those with a vision loss. No captioning on videos. No consideration for making town hall meetings accessible through interpreting, captioning or physical access. No thought, whatsoever, had been given. Over two years I tried to get the Council to consider these things.

The Emergency Services Manager at first promised the earth but did nothing. My persistence was met with contempt. She stopped responding to my emails altogether. I would talk to her and she would patronise me and smile. She once said … ” Gary, we have a community, they will look after the disabled members.” While I agree, there is a role for the community, there is so much that needs to happen to ensure people with a disability are informed and safe. The ignorance and complete contempt for the needs of people with a disability was scandalous.

Luckily there were and have been no major disasters in the area in this time. I truly fear for the safety of people with a disability because there is no plan to respond to their needs. No plan for accessible evacuation vehicles, no plan to communicate with deaf members, no audit nor knowledge of where people with a disability might be. You see, the neighbours will save them.

Is this abuse and neglect of people with a disability? Is this something that the Royal Commission should hear about? Must someone die first until people realise the magnitude of what needs to be done to respond to the needs of people with a disability in the case of an emergency? My friend has a point. Disregard and ignorance of the needs of people with a disability is neglect.

Until recently I was a member of the Disability Workers Registration Board in Victoria. I got a job in Adelaide and had to resign, sadly. This Board was looking at standards required to employ people in the disability sector. A disabled member of the Board raised an issue of attitude.

He said qualifications are one thing, but how do we measure attitude. How can we ensure that people who work with people with a disability understand human rights, dignity, equity issues, power imbalances and the like. He pointed out that he would much rather have someone working for him that met an attitude scale rather than just a focus on qualifications and meeting police checks. He was right. I hope the Board take his concerns seriously.

I mean its 2020. Just last year someone I worked with in the NDIA gave me some work. She didn’t quite pat me on the head but she said… ” I have every faith that you can complete this work.” For fuck sake, it was just checking NDIS plans. 30 years experience and a title of Senior Planner and I get patronised like that.

Then I was in a meeting with my manager who was frustrated with communication issues and having to ensure I could lipread her. “Gary ..” she said, ” Perhaps you have more important work at your desk. Would you like to go and do that.” I must have given her an almighty dirty stare because she almost physically jumped back. ” No thank you.. ” I said, “This work is very important too.”

She later apologised but the number of gaffs she made was appalling. For example she tugged her earlobe and  said .. ” Gary, listen to me.. ” She once had the gall to tell me to stop taking notes and focus on the Auslan interpreters. This is a person in a high ranking leadership position working with people with a disability. What did the employer do to measure her attitude and approach to working with people with a disability?

Not a lot it would seem. And this is what the Board member was touching on. To work with people with a disability takes more than just a piece of paper. What can we do to ensure  people who are working with people with a disability are not just academically qualified, not just accountants but actually know how to relate to people with a disability and treat them with respect.

It is a big hole in the sector, the elephant in the room. No one wants to address it because it is too hard. Meanwhile, people with disabilities are still labeled occupational health and safety risks. Meanwhile, organisations are neglecting their responsibilities and expecting “The Neighbour’s”  to pick up the slack.

Australia has improved in terms of disability rights but there is still much to be done. Neglect of people with a disability happens in so many forms. People in leadership roles are chosen for the wrong reasons and this leads to poor decisions, ignorance, neglect and indirect abuse.

We all know that the abuse that people with a disability have endured, both physical and sexual, is horrendous. I fear that unless we make a real effort to address the attitude and power imbalances we will only ever paper over the cracks, no matter how many millions of dollars are spent on the Royal Commission.

Here is to a better and safer world for all people with a disability. The current one in Australia is nothing to be proud of and leaves a lot to be desired.