The NDIS Epidemic

Picture is a drawing of a long haired woman screaming while holding her throat. Her eyes and mouth are obscured in the picture. It is black and white.

Apparently, Price Waterhouse Coopers (PWC) found that mental health has overtaken the cost of living as Australia’s biggest concern during the Pandemic. The Sydney Morning Herald Editorial, July 20th, 2021 highlighted this issue. It listed numerous reasons for this. Kids at home being bored, parents juggling work from home with home schooling, being in constant close proximity of each other, isolation, boredom and so on. All of these things had, and continue to have, an impact on our mental health. Apparently demand for Mental Health Services has not increased all that much during the Pandemic. It is attributed that this is because people choose pretty much to go it alone and not seek help. I wonder if this is the same with the NDIS.

People may scoff at the suggestion that the NDIS is adversely impacting on disabled peoples mental health. If you are a regular reader of the NDIS Grassroots Page you will come across many people posting comments despairing at the decisions that the NDIS make. Often there are angry posts about delays, cuts in funding, need for constant reviews, lack of communication and so on. The uncertainty of process and the complexity of the NDIS system are causing anguish to people with a disability. It is very real, even traumatic.

I assist quite a few people who have been “shafted” by the NDIS. I realise that this is a strong word but sometimes that is how it feels. The first one that I ever assisted came to me in tears. Like a lot of people with a disability she has had to fight for many things. Whether its education or equal access and inclusion at work she has had to fight for it. She, like many of us, expected that the NDIS would be on her side. To find that it wasn’t came as a big shock.

So anyway, she came to me in tears. She is deaf and received a bizarre plan. It totalled $5000, of which half was to fund a plan manager. There was about $1800 for an assessment for low cost technology that had been funded to a total of $800.

Let’s be clear on this. Of a plan of $5000 only $800 was allocated to purchase anything of value for my friend. The rest was going to a plan manager and someone to assess how she could spend that $800. Her expectations of the NDIS had been high. To get such a pathetic plan was like a dagger to her heart. She was rightly upset. She needed interpreting, she needed technology, she needed communications devices as well as OT support to identify the technology that she required. The $800 did not even scratch the surface of what she needed. Hence, her tears.

We went for review and put in a complaint. She was understandably reluctant to even do a review. She didn’t want to have to face the trauma of being knocked back again. Luckily she did and upon review she received a much improved plan. But at what cost? Not just money and time but stress and worry on her part. It should not be this way.

I wrote about this in The Rebuttal last year. On publishing this article I received an influx of requests from people, mostly deaf, who had received terrible plans. Reviewing these plans is not a straight forward thing. It often requires more reports. More visits to the doctor. More visits to the therapist. It requires many hours to carefully craft reviews in such a way as to get the NDIS to change their mind. Mostly, it involves frustration and worry for the participant. It is demeaning to have to constantly justify your needs because people in the NDIS stuff up.

Some of the decisions are just pig headed. Not helped by the fact that decisions are inconsistent. Many deaf people are requesting a system known as Visualert. They want this system because it provides them with a high degree of safety in their home. It provides them with visual alerts to the fire alarm, the doorbell and even CCTV. It does this through a system of colour coded alerts that are hard wired so that the Deaf person knows whether it is the fire alarm going or the doorbell ringing.

It is my strong view that this is one of the best systems on the market. Not only that, it is a system that gives the highest amount of safety. It is more expensive than other systems but you get what you pay for.

Legislations state that hearing people must be able to hear an alarm from various points in a home, including outside. It follows that a visual alert system must be seen from as many areas of the home as possible, including outside.

Recommendations for alarm systems are that they be hard wired and with back up battery should there be a blackout. They should not rely on power alone. They should not rely on batteries alone. They should not rely on the internet or wearing of a pager that can be broken or forgotten. They have to work ALL THE TIME!

Visualert is the system that best meets this need, in my view. It is why it is being increasingly recommended by occupational therapists. Some people are being approved, most not – because the NDIS deem it as too expensive. What price do you put on human life? I ask you.

I am assisting a few people to appeal who have been declined this system. They are are being made to jump through hoops. What surprises me is that I have witnessed NDIS lawyers actually lying on behalf of the NDIS at AAT.

One lawyer claimed that they had appointed their own occupational therapist to gather evidence. They claimed that they were going to fly them interstate to carry out the assessment in the persons home. This was an outright lie. At all times they have suggested, by email, that the assessment would happen online. (The participant successfully argued that an online assessment was not appropriate and that it needed to happen in the home.)

Upon being directed to find someone in that State to do the assessment in the home, the NDIS delayed finding someone. They had to be reminded that they had been given a three week time frame to do so. They found someone then emailed and said that person couldn’t do it anymore and reverted to their original therapist and doing it online. When told they had been directed to find someone to do it in the home they claimed that they had only been told to, “Explore the possibility.”

This whole process has taken 5 months and is still going with no end in sight. Meanwhile, the deaf person has no safety at home. They are stressed and they are constantly being told to attend meetings, give up time at work and to no avail. Imagine the impact on their self-esteem that the NDIS will quibble over a few thousand dollars on the matter of their safety. Yet, the NDIS will spend millions to try and win cases at the AAT – A large proportion of $23 million last year it seems.

The other big thing that the NDIS often do is deny Auslan to families and individuals. Sometimes they give it and then they take it away. They give any number of bizarre reasons for it. They will say that its the Education Departments responsibility. They will say it is a parental responsibility. They will say the family need to pay for themselves to learn. They always fail to understand that Auslan is a language that can be crucial to human development. Particularly for young deaf kids.

I have had some success in getting Auslan restored for families. I do this by getting strong reports that outline the language milestones, psychological benefits, impacts of interacting with family on language development, consequences of delayed language development and so on.

One time we got $8000 of funding restored because, apparently, the NDIS had just forgotten to put it in the plan. Imagine the parents despair at having to spend $5000 of their daughters plan on new reports because the NDIS forgot! Notwithstanding the unnecessary expenditure! Worse, the delay in language development in the child and the cruel stress and worry that they have placed on the parents. It is unacceptable.

In a recent case I have been supporting a person with multiple disabilities to have their Auslan funding restored. They are mostly bedridden. They are deaf and they sometimes, in moments of stress, lose their function of speech. They wanted Auslan so that they could communicate smoothly with their family and support workers, particularly if they lose their function of speech. This can happen at anytime.

Obviously, not being able to communicate causes them a great deal of anxiety. The anxiety means that they are constantly on edge. It exuberates some of their existing conditions and can make them quite ill. Auslan is their safety net. They, their family and support workers need to learn it as an alternate communication method.

But Auslan funding was removed. Bizarrely the NDIS delegate deemed that learning Auslan was harmful to the person. The NDIS said that learning Auslan would make the person more stressed and tired. In turn this would worsen their condition. They justified this with the argument, and I kid you not, that interpreters are only allowed to sign for an hour at a time.

And so begins the fight to have the persons funding restored. Meanwhile, the stress and anxiety being placed on the person is impacting on their health and mental health. Meanwhile, by cutting the funding this delays the learning of a much needed alternative communication for the person and their family. Why? Because the NDIS are seeking to cut costs based on a value judgement that has no basis in fact!

It is a disgrace, probably not helped by the fact that the Auslan service provider quoted near $9000 to support this person learn Auslan. Greed or bad management on the service providers part? – Whatever the reason, $9000 seems excessive to me.

These are just some of the real life situations that people who are deaf and their families are confronting everyday through the NDIS. The stress and the impact on their mental health is very real. Many actually just give up because the stress is just too great.

They have been fighting all their lives for minimal gains in access and this makes them feel extremely undervalued, even a burden. That Australia’s premier disability program is doing this to them is the last straw. It is a national disgrace!

I leave you with this cry of anguish posted on the NDIS Grassroots Page – It is printed with permission –

To The NDIS I have committed the most heinous of crimes.

My crime being a Person with Multiple Disabilities.

Guilty on all accounts. I don’t deserve to be treated with equality!

I don’t deserve to be alive. 

I no longer contribute to society as I once was able to as an able bodied person. 

I don’t deserve services from allied health professionals, support workers. 

I don’t deserve to be treated as a whole person. 

I don’t deserve to be listened to and heard. 

I’m defeated! I’m tired, I am mentally, emotionally and physically drained.

I am a bludger, I am a burden, 

How dare I wish for quality of life, to be part of community

I am an empty shell. 

Don’t worry I am completing my Advanced Health Plan. 

NDIS. You will be pleased to know that I opt not to be revived. 

This is how far I’ve been pushed.

I thank the person for allowing me to publish this. I dare say many in the NDIS, including the Minister, don’t care. One less is one less cost. !

Open Letter to Minister Reynolds

Image show two hands seemingly counting money.

Dear Minister,

I have never met you. Until this year I had actually never heard of you. A certain Ms Higgins brought your name to the fore. Among other things I found out that you were the Minister of Defence. You came across as pretty feisty, even going as far as calling Ms Higgins a liar and comparing her with a female of the bovine family. It seems that the stress got to you and you became quite ill. I sincerely hope that you are well now and on the mend.

What I am about to say may hurt, even make you angry, It is possible that you will even compare me to an animal and and label me any number of things that might include a liar, shit stirrer, A/hole or whatever. I understand that your job is thankless and that toeing the party line is something that you must do, even if you do not agree with it. I get it, and I don’t want to get personal. However, I fear that I will.

I am angry and very frustrated with ongoing comments about the “cost blowout “of the NDIS. I am tired of hearing it. As a person with a disability I am also tired of being labelled a burden to society, which I assure you, I am not. I am exasperated that no one in Government ever talks of the benefits of the scheme, and not just for people with a disability. As the Minister responsible for the NDIS, I and the Disability community expect you to be across this.

Let’s be clear, although the NDIS is expensive, it also contributes. It is creating employment, It is creating new markets. It is creating opportunities for greater economic input from people with a disability, their families, their friends and their colleagues. Indeed there is a figure in the old Productivity Commission Report about the NDIS that neither you, or anyone in the Government that you work for, ever mention.

You will see that the report estimated that the NDIS would increase the GDP by 1% and that the benefit was not just good social policy but good economic policy too. As the Minister responsible for the NDIS I expect you to talk the NDIS up, not down. I expect that you provide us with all the figures, not just the outgoings!! (Read this Ms Reynolds, it is hidden away in the NDIS own archives )

PRODUCTIVITY COMMISSION REPORT

I am also frustrated that a lot of the unnecessary costs that you talk about are actually the result of having a workforce, including you as Minister, who don’t get the NDIS or disability. I assist NDIS participants to review their plans. This happens because decisions are made by the Agency that make no sense, whatsoever. You are fond of talking about inconsistencies. Let me tell you a couple of home truths.

Firstly, inconsistencies happen because no one person has the same needs. In my case I am deaf. I don’t need hearing aids because I am too deaf. My deaf friend up the road does. But she needs a specific hearing aid for her particular hearing loss. They are above the standard costs of hearing aids and needed because standard hearing aids will not assist her. She is socially and economically isolated because she has had to adapt to her hearing loss as she is latter deafened. Her NDIS plan is necessarily more expensive than mine as her needs are different. That’s how it works, there is no one size fits all.

Inconsistencies occur because a lot of the NDIS workforce, including you, don’t get this. As a consequence they make absolutely bizarre decisions that are constantly going for review. So bad is it that the NDIS reviews team cannot keep up and people are waiting months and months for decisions. Often they end up at AAT with all of the fat cat lawyers. Was it $23 million that the NDIS forked out on legal fees last year, much of it trying to defend some of the bizarre decisions that they make. If you want to investigate costs, look at the decision making process area first and don’t blame people with disability.

I have said it often, when the NDIS get it right it is a game changer. Thankfully this does happen a lot. However, there are too many crackpot decisions being made by people that do not know what they are doing, including a succession of Ministers like you.

Now let’s look at the blame game. It’s our fault you see. Us expensive disability folk are the reason the NDIS is not sustainable. (It couldn’t possibly be the ignorant ablebods screwing up the decision making could it?) Let’s look at some of the reasons you gave in a recent interview – You can read it here if you want to remind yourself – https://www.news.com.au/national/politics/minister-warns-ndis-will-outstrip-the-cost-of-medicare-in-two-years/news-story/3c2196792b7fd771161991548a4a2dca

Your first argument was that it is the Autistic’s fault. Apparently, it was expected that kids who are autistic would leave the scheme at some stage and not need ongoing support. They enter the NDIS as babies and they don’t exit when they are six. This means, according to you, there are more people with Autism on the scheme than anticipated and its expensive. This is why you need to employ people that get it. I despair!

I mean, what did you and they expect? That kids with Autism would get therapy and suddenly become “All Better” I am sure, in fact I know, that there are some that need less support over time. I know that there are others that continue to need support because our world is simply not designed for the way that they see and experience the world.

Like me and my deaf friend, people with autism don’t all experience autism in the same way and their need for support varies greatly. I dare say, a society that tries to make everyone fit the norm causes a lot of actual harm through the so called therapy. This, in turn, leads to the need for even greater support. It’s not the fault of people with autism that they require support, its the fault of a society that tries to mould everyone in to one size fits all. Please stop blaming them.

Then you said that when people with a disability get old and go past the age of 65 they are choosing to stay on the NDIS rather than go to Aged Care. This might be because Aged Care isn’t really designed for people with a disability in the same way that the NDIS is. The law is clear, if you are over 65, have a disability and are not on the NDIS you are not eligible. It is equally clear that if you are an NDIS participant and you turn 65, you can decide to remain on the NDIS or go to Aged Care.

This means that many people choose to remain on the NDIS rather than go to Aged Care because they know Aged care will not meet their needs. Why are you surprised? That’s the law and why it was written. Please stop blaming people who are turning 65 for making a decision that they see as best for them!

My favourite is that it is the fault of the obese. Apparently, there are too many people on the NDIS that are getting support because they are obese. Let’s be clear, obesity is not a disability. Any person worth their salt and works for the NDIS knows this. It is a medical condition. BUT!

  1. Some people who are obese have resulting and permanent physical disabilities. As a result they may need equipment and support because of those physical disabilities. Obesity is not the disability, but the other physical conditions are.
  2. Some people who have disabilities become obese through poor nutrition, social isolation and lack of physical activity. These people need support for their disabilities and this may lead to better nutrition and more exercise. This, in turn, may actually assist them to address their obesity.

BUT, lets be clear, it is the disability that is funded not the obesity.

This rationale that I have explained is what happens when you get it. This is what happens when you understand disability. I dare say, if anyone in the NDIS has classified obesity as a disability, well they need to review the legislation. It will be clear that obesity is not a disability but obesity may cause disability and visa versa, disability may cause obesity. Blaming people who are obese for some of the NDIS so called “cost blowout” is the most bizarre thing that I have read so far. And it came from you Minister Reynolds. That is scary!

I know that some of this will hurt and anger you. But I am hurt and I am angry too. I ask that you consider the points that I have raised. I ask, particularly, that you become more open minded of the broader benefits of the NDIS, that you acknowledge some of the internal reasons for “cost blowouts” and, more importantly, stop blaming people with a disability – That hurts!

Thank you for reading. That is all!

Kind Regards

The Rebuttal Team

This is Australia!!

Image is of a man at his laptop. He is clearly frustrated. His spectacles rest on his head while he rubs his eyes and nose with one hand in obvious tension.

This is Australia, as I am sure is most of the world. It has become fully automated. Phone calls are inevitably answered by robots.  You call and any number of options are provided so that you can be directed to the right person. Often the right person is another robot who then processes what you need automatically. If you are patient, you may actually get to talk to someone.

In recent years Deaf and hard of hearing callers have been able to bypass calling through the National Relay Service with the introduction of Chat. You could go to a website and send a text message and bypass the robot and actually deal with a person by text. The great thing about these Chat things is that they often allowed you to bypass long queues. So, where hearing people were waiting hours and hours to get a Telstra operator the Chat feature took you straight to someone. 

Sadly, even these Chat features have now been replaced by bots. You are encouraged to ask Sharon:

G: Hello?

S: What does your enquiry relate to?

G: I’d like to buy a new washing machine.

S: Front-loader or top-loader?

G: Front-loader.

S: We have some fantastic deals for you, call 08 8258 8682 and one of our friendly customer service staff will be more than happy to explain your options.

I mean, fuck, one of the few advantages we Deafies had, hearing bums have managed to take it away from us.

This week I resigned from work. I work for the Centre of Disability Studies (CDS). I reluctantly resigned because CDS are a wonderful place to work. I accepted a Team Leaders role for a disability advocacy organisation. Covid has caused all sorts of problems getting to see my family because of lockdowns and border closures. The new job will help lessen this problem. And hey!, I am an advocate at heart, so the job is ready made for me.

The great thing about this new role is that it is part-time. Gives me some time to do projects. One such project is to do my Certificate IV in Assessment and Training. This will allow me to do some adult education, teaching at TAFE and pass on my knowledge. I found one at a company called Inspire. They offer it Online and are way cheaper than others.

So, as you do, I sent an online enquiry. And within 15 minutes they called me. I kind of knew it was them cos they were the last people I provided my number to on their online enquiry form. I waited a bit, unsurprisingly an email followed:

Hey Gary.  I know you have been trying to reach me about your Cert IV TAE course.  Tried calling, but you didn’t pick up – so I thought I’d better get back to you ASAP. Gary, I have critical information about your Cert IV TAE for you. Please call me back ASAP at 1800 506 509.”

Of course, I replied that I was deaf. Could they please email me and that I would be happy to correspond that way. I didn’t hear anything straight away but when I awoke in the morning there was a missed call from them and another email:

“So sorry.  Still haven’t been able to reach you.  Really hoping we could connect before this enrolment window ends. The course options for your Cert IV TAE are really awesome at the moment, and I reckon the delivery of this course particularly may work well for you. Gary, is there a best time for me to call you to talk you through them?  Alternatively, please call me back ASAP at 1800 506 509.”

And so, once again I emailed and said that I was deaf and that I could not speak on the phone. I asked that they email me the course outline and how the course was delivered so that I could then consider whether it was right for me. I was not confident that I would get a response because I was aware that these Emails were fully automated. For all I knew Manny was a microchip of some sort. (Readers, please don’t get technical with me, I am well aware of my limited PC knowledge :-D)

So, blow me down with a feather. Manny was actually a person and he did respond to me, and in person. He took the time to outline the course in more detail. I responded and asked Manny to outline a little more of the method of delivery. What tools were used, what media was used and so on so that I could then work out what adjustments needed to be made.

Sadly, Manny blotted his copy book, or at least Inspire did. They sent me another email:

“It was great speaking with you with regards to your goals for completing the Cert IV TAE.  I know at this stage you are doing some research, which is totally fine.  You definitely want to make sure this course is right for you before you enrol. Based on our conversation though Gary, the Cert IV TAE may be perfect for you.  By studying with Inspire – you will gain instant access to our leading course delivery platform.  As well as completing your course in style – you can complete it in the shortest possible time frame you can manage.”

Of course, I had not spoken to anybody. Not Manny, not a bot, not a chat bot – No one! I had, until that time, received just the one personal email. I was naturally quite peeved and my saracasm kicked in. I sent Manny the following email:

“Dear Manny

I know that you are restrained by your firms automated system.  You just sent me an email saying it was nice to have spoken with me. We didn’t speak because I am deaf. I have, however, sent emails. One that you have responded to personally.

Manny, I am very interested in enrolling, which I assume will be a feather in your cap. However, being deaf I need to understand the structure of Inspires online course to be able to pin-point accessibility issues and address them. For example, videos without captioning. 

So, in the meantime, if you can give me an idea of how the course is taught, in what mediums etc  I can begin to ascertain what adjustments need to happen so that I can access the course.

Of course, being one of Australia’s largest providers, I am sure Inspire will be keen to assist me to make the necessary adjustments where possible.

I look forward to your response.

Regards

Gary”

I can see a few people going, “OH GAZ, that was mean!!” Possibly it was, but sometimes this world that is built fully for hearing people, with no thought to others, just gets up my nose and I have to offload somehow.

As I write this Manny has just sent another email. And this is what he says:

Hi Gary,

As we specialise in online delivery, it will be pretty hard for us to cater to you as CERT IV TAE requires you to do presentations, listening to presentations, assessments tasks etc. I would recommend that you find somewhere who can face-to-face learning which may be easier for you”

And, of course, I have replied:

“Dear Manny

You are in luck. I am the co-author of Guidelines for Supporting Deaf and Hard of Hearing Students Online.  Please see the attached link.  You are in luck, you have an expert who can assist you to adapt your course, not just for me, but other students who are Deaf and hard of hearing.

Let’s get to work. I look forward to studying with Inspire!

https://www.adcet.edu.au/resource/10475/guidelines-supporting-deaf-and-hard-of-hearing-students-online “

Sincerely 

Gary”

As an epilogue to that last email from Manny, automated Manny sends me another:

Gary, as you know you have actually enquired at a great time!  Our ‘Pandemic-Support Initiative’ Sale is on now…  Massively Reducing the Cost of your Course! This means that you can get started with one of the best prices we have offered. Remember, this sale is until 31st August only – so why wait any longer?”

LOOOOOL – This is Australia, isn’t it fun!??? Watch this space!

Michael Lockrey – Palindrome Man

It was a glorious spring day in Adelaide around 2001. The tennis was on. Deaf tennis, that is. Glen Flindell thrashed all and sundry that weekend. He went on to dominate Deaf tennis in Australia and the world for many years to come. I think he is over 40 now and still can’t be beaten. At this tennis tournament I met a balding and jolly man called Michael. He signed haltingly and with some difficulty. He struck me as a jovial, gentle and genuine human being. Over the years, he would seek me out at various sports events or Deaf conferences. He was always pleased to see me and always friendly. We were not close friends but we had a mutual respect for each other based on our love for sport and equal rights for Deaf, hard of hearing and all people with disabilities.

Michael was born at Crown Street Hospital on the 28th of December, 1968. He grew up in Blaxland in the Blue Mountains. His father, Lyn, recalls fondly that even at an early age, Michael loved sport. “He was a bonny young lad who loved kicking his rubber ball up the hallway, yelling DOAL DOAL DOAL.

Around the age of two and a half, his parents noticed signs of hearing loss in Michael. His hearing deteriorated very quickly. Initially it appears Michael had a moderate hearing loss, possibly from mumps. As he grew older and entered primary school, his hearing loss reached a point where Michael was profoundly Deaf.

Michael was a resolute human being. Recalls Lyn, “He was determined to succeed. He would often come home exhausted from his effort to keep up with his peers.” Lyn’s pride in his son is on show for all to see. “…Michael did extraordinarily well, despite hearing almost nothing.” With support from his itinerant teacher for the deaf, he gained his high school certificate in 1986.

Michael enrolled in business studies at Southern Cross University. He graduated with a number of high distinctions. It appears that Michael had some support from the university. His father, Lyn, thinks he learned mostly from what he read and what he saw. Lyn tells the story of a vision impaired man who Michael befriended and who was studying the same course. What Michael saw on screen or in lecture, he would note. What his vision impaired friend heard, he would note. At the end of the lecture, they would exchange notes. In this way, they supported each other throughout their studies.

Michael graduated and started work as an accountant. He was successful at work but he had his struggles. Those struggles really opened his eyes and inspired him to lobby and fight for equal rights around accessibility for people with a disability.

Along the way, Michael found the Deaf community. This really changed his life and perceptions. Writing in The Rebuttal in 2010 he had this to say:

I was schooled in the lipreading /auditory approach from a very young age. It was certainly effective – as I can still recall meeting my first Deaf (signing Deaf) person in my teens and I really thought that I was nothing like him and that I was really a “hearing” person! Obviously, this was a fallacy (and a half)!

My biggest personal regret of my life to date is that I didn’t learn Auslan until I was 30! Looking back over my life I can see countless missed opportunities – both professionally and personally – as I simply couldn’t measure up as a “hearing” person. 30 years of butting my head against a brick wall in the mistaken belief that I could be a “hearing” person (when I was profoundly Deaf)!

Michael, like many Deaf and Hard of Hearing people, entered the Deaf community well into adulthood. It was not until he was 30 years old that he started to learn Auslan. Lyn recalls that there was one Christmas that Michael was hit by the stark realisation that his hearing loss had deteriorated to the point that he could not hear nor lip read his mother effectively. From there, he researched deafness and solutions and came across the Deaf community.

Of this journey, Lyn had this to say:

This became a turning point for him. He resolutely faced the challenges and sought solutions to the many  issues  concerning inclusion, fairness, accessibility and justice for people with disabilities and in particular for the Deaf and hard of hearing. He became a fierce advocate for them on a number of fronts. He developed the ability to view life, it’s challenges and solutions from two worlds, the hearing and the deaf. Hence, I think that’s why he used the term, “The Palindrome Man”. Fairness, justice, inclusion, accessibility, equity, being seen and experienced, “the same”, from both ends of the spectrum.

My own recall of Michael is as a supremely intelligent, compassionate and empathetic human being. His friend Barney Lund agrees: 

I remember my Mum, Hillary Mcpherson, saying to me that I should meet this guy Mike who owns a 10 seater bicycle and who is also Deaf. I never did get to see the bike but I did get to meet a really down to earth guy with a great sense of humour. 

I didn’t really get to know him well until after we connected at the World Congress on Mental Health and Deafness in Brisbane in October 2009. . I had never really had much contact with other deaf people growing up, so it was really nice to meet someone with some common interests and experiences. That chat with Mike and attending the Mental Health and Deafness Congress were two really pivotal moments for me. A lot of the issues I experienced as a kid and young adult started to make sense, and also helped me to connect with more of the Deaf community in Brisbane and on the Northern Rivers. I will be forever grateful to Mike for taking the time to sit and chat that day.

Michael did many great things for Deaf and hard of hearing people. Perhaps he is best known as the chairperson for the Australian Communication Exchange, a position he held for 6 years. He campaigned tirelessly for the introduction of new technologies such as Captel. Barney recalls that Captel was a life changer.

At the time Barney was working for the State Government and struggling with the phone work. Captel enabled him to speak on the phone and he no longer had to struggle with accents and bad phone connections.

Barney credits Michael with having opened his eyes to the benefits of captioning. Through Michael Barney began to explore the use of live captions in work meetings. Says Barney: 

Mike and I thought live captioning had masses of potential for people like us who didn’t have enough sign language proficiency to benefit from Auslan interpreting alone. Live captioning has had a huge impact on my life ever since.

So much, in fact, that Barney works within the captioning industry. I can vouch for his knowledge, because he is my go-to person whenever I need advice or support around live captioning.

What is not so well known about Michael is his ongoing campaigning for captioning in all of its various guises. Barney explains that Michael had an end-to-end strategy around captioning. For example, Michael worked with young film makers to increase their knowledge of captioning and its benefits. Those filmmakers are the future and by making them aware of the benefits and how to caption, Michael knew greater accessibility would happen into the future.

Michael also worked with an American friend, Mike Ridgeway. Together they developed a platform called, NOMORECRAPTIONS. To explain, sometime ago Youtube introduced auto-captioning. Basically, this was technology that used voice recognition to caption videos. Voice recognition technology has come a long way since but back then it was terrible, and I mean terrible. If you want a trip down memory lane, watch this video.

Through the platform, Nomorecraptions, the user could take the Youtube auto-generated captions and correct them so that they made sense. Michael and his friend made this platform freely available so that people could improve the accessibility of their online content.

Barney recalls how Michael and his father, Lyn, lodged countless complaints to the DDA about the lack of captioning, particularly around online content. They took on the likes of Apple and Barney believes that because of their determination, all of us Deaf and hard of hearing folk are benefitting today: 

“I am not sure how many complaints they filed, but I am pretty certain their work has helped pave the way for far better online access today.”

Lyn proudly tells the story of how Michael took on Malcolm Turnbull, the then Communications Minister, and won.

He lodged a Disability Discrimination complaint with the Australian Human Rights Commission against the former Communications Minister, and later Prime Minister, Malcolm Turnbull. It concerned the use of auto-captions on government YouTube videos and the need to comply in having correct, closed captions on all government videos. It was resolved in 2017 with the Office of the Prime Minister committing to ensure all its future videos would now be accurately captioned prior to posting to the web. “

In 2010 Michael won the prestiges Roma Wood OAM Community Award, for his advocacy and innovative work with captioning.

I had many a debate with Michael about the benefits of Captiview. For those that do not know, Captiview is a device that you can get at the cinema that you place in your drink holder to view movie captions. The only problem is that it was and is, rubbish. So much that the Deaf community dubbed it, and continue to call it, Craptiview.

I was a staunch critic. Michael was more middle of the road and wanted to give the technology some time to settle in and develop. He was far more level-headed than I. I wrote countless articles against Craptiview, voicing the views of many in the Deaf community.

One thing that Michael and I both agreed on was that Open captions were the best. Michael campaigned relentlessly for Open captions in cinemas and was instrumental for open caption sessions being introduced in Ballina. He regularly posted on Facebook to advertise these sessions.

In later years I enjoyed following Michael on Facebook. I smiled at his surfing videos. I smiled at his videos going fishing with deaf mates on the boat (I swear he looked seasick). I loved his tireless promotion of deaf poker. He was into everything and supported so many people and causes.

Proud father, Lyn, talks about these causes. There was online captioning for which he is generally known. What is not as well known is that Michael campaigned to have Deaf and hard of hearing people be allowed to do jury duty as is commonplace in the USA. Michael staunchly insisted that jury duty was possible using either interpreters or captions that are generated by the court stenographer. He and Gemma Beasley took their case all the way to United Nations Convention on the Rights of Persons with Disabilities. This was the outcome:

CRPD Committee held that the refusal to provide steno-captioning in court and in the jury-room violated the access to justice requirement of article 13 of the CRPD. The CRPD Committee further held that the failure to accommodate violated articles,  5(1) and (3) which prohibit discrimination, and also article 9 which ensures access to communication.

Sadly, State Governments around Australia still refuse to comply. The governments argue that the captioner or Auslan interpreters bring their own interpretation to the proceedings and thus constitute a 13th member of the Jury. It’s bollocks, we all know, and it is a fight that we must all continue.

This is Michael Lockrey. He was one of Australia’s great and unsung Deaf advocates. His achievements are enormous. Believe me, I have only touched the surface of what he achieved in his short time on this earth.

Michael contacted me in September of 2020. He wanted me to work with him on training paramedics around communication with Deaf and hard of hearing patients. Sadly, Michael passed away suddenly on the 24th of November 2020 and we were unable to work on this project.

I wish I had known him better but I was honoured to have known him. Like many, I miss him. We all should, because he was a real fighter and credit to all people who are Deaf and hard of hearing, and indeed all people with disabilities.

But mostly he was a credit to himself and his family. As his children said to their Nanna and Pop:

“Our Dad was the best dad you could have asked for”.

Ill leave you all with these beautiful words from his father, Lyn:

The other day I looked at his trophies that have been stored away in a box and thought about Mike and I penned this line,

“Life’s greatest trophies are the friendships you’ve made and the way you’ve played”. On Ned Trickett, his great grandfather’s grave appear the words,

A man justly honoured by all who knew him

a noble type of sportsman, 

an equally noble type of citizen”, 

Michael, you’ve taken after your great great grandfather, 

God bless you and rest you in peace, dear Palindrome Man.

With thanks to Michael’s father, Lyn Lockrey, and his friend , Barney Lund for generously sharing their cherished anecdotes of Michael the person and Michael the advocate. Mostly, thank you for trusting me with his story.


 

Australia’s Favourite Advocate

That’s me you know. I have anointed myself. I cannot come to any other conclusion. I know it sounds like I have tickets on myself, and I probably do, but everyone seems to be asking for help at the moment. You have to ask whether our paid organisations are actually missing in action.

Now let’s be clear. I sometimes get paid for the advocacy work that I do. Sometimes I don’t. I work full time, not as an advocate. Often people or families simply do not have funds to pay. Nevertheless, I will still help them. You cant really leave them in the lurch. I will disclose, however, that I often say to people to contact X, Y or Z. They often tell me they did but got nowhere, or worse, that no one got back to them.

I willingly help. It isn’t a stress really. It helps me flex a bit of brain muscle and adds a bit of spice to my life by way of variety. Let’s look at a small sample of what I did in the last two months.

  1. Helped family review their daughters NDIS plan and have Auslan training funding reinstated. (The NDIS apologised and said they forgot to put the Auslan in .. PFFFTTTTTTT!!!! )
  2. Helped man B do a change of circumstances review. Arranged for new evidence by way of report to be made which looked at legislation and compliance. This was for the much vaunted Visualert system that the NDIS dont want to pay for. The team won by the way …. Yes we did, GO TEAM (Team was me, audiologist, OT, participant and his family.)
  3. Just today sat through an AAT appeal where the NDIS wanted the treating OT removed from the hearing and new evidence be submitted by their “Expert OT”. NDIS sought direction from the Tribunal and the Tribunal found in favour of the participant. The NDIS lawyer couldn’t even get the name of the OT right and contradicted themselves three times. It was pure incompetence.
  4. Assisted a man with his Workcover appeal and to get his workplace to recognise his skills and abilities. They agreed to provide him with meaningful work that was commensurate with his abilities. The man was very stressed but I have to say his workplace were wonderfully accommodating and understanding. He is now back at work with a new team and meaningful duties.
  5. Assisted an organisation to write a community impact statement for a scholarship program that they were developing. I could have charged for this but the CEO is a great mate so I was more than happy to help. it was to do with Auslan, so hopefully they will get what they ask for.
  6. Unsuccessfully tried to get Auslan interpreting for three deaf people that want to do training through a private training organisation. The organisations cry poor. The NDIS say education is a State responsibility and won’t help … Meanwhile the three are in limbo while these arseholes shirk their responsibilities.
  7. And my favourite – I was asked to help out remote communities in Northern Queensland to assist them to get the most out of their NDS plans. All going well I take leave from work and fly up there for a week. (They pay the flights, but I have volunteered my time.)

That is just a little snapshot of what I am doing. I have left several examples off the list so as not to sound too bigheaded :-D. I raise these snapshots because clearly there is a need out there but organisations don’t appear to be hitting the mark. These people are from South Australia, Queensland, NSW, Northern Territory and Victoria – All over Australia. I am not saying that our paid organisations are doing nothing, but clearly there are many people falling through the cracks and something needs to change.

So as Australia’s self anointed favourite advocate I am going to offer our organisations some free advise. It’s free so they can either like it or lump it!

Here is my advice.

Firstly, on priorities:

  1. Employment sucks. people with a disability in Australia still are grossly underrepresented in the workforce. They are either not employed or underemployed. Even those that graduate have worse employment outcomes than able bodied people that graduate.
  2. People with a disability, people who are Deaf and people who are hard of hearing people have a right to access whatever training that they want. Whether it is State funded, a university or a private training organisation. Just today I got wind that a TAFE were trying to make deaf students use their NDIS funding to pay for interpreters to attend course information sessions. This is illegal under the NDIS agreement with State Governments. When is this shit going to end????
  3. The NDIS is paying more money to deny supports through their lawyers than the cost of actual supports themselves. They are putting people with a disability through enormous stress through reviews and appeals. Participants are waiting months and even years for resolutions. Who is doing any thing about this?
  4. Deaf and hard of hearing is a very broad church. They have a a variety of needs across many areas. Employment, Education, language acquisition, access to services, access to communication. For the latter, it is not just Auslan – A very small percentage of people that have a hearing loss use Auslan, who is speaking out for the very large percentage that don’t? Please do not get me wrong, Auslan interpreters are crucial, but who is speaking for the rest???
  5. Hospitals – Where do we start!

It is my view that all of the above are critical issues. Sadly, I never hear anything about them from our organisations. I never hear of how they are all working together to address these issues and bring them to the attention of the Government at State or Federal level.

Did you know, for example, that Auslan for Employment (which you can also use for captioning) has not increased since 2007/2008. Did you know that it is a flat rate of $6000 per year, no matter where you are. Whether you are in regional area or whether you are in the city, whether you are a professional or a McDonald’s worker – you still get only $6000. Did you know mine was spent in 8 weeks? Did you know that when I was working at the Brotherhood of St Laurence, that in 8 months the bill for two deaf staff was $84 000 and that I was told to find ways to cut back. (My suggestion that they have less meetings didn’t go down very well.) Yet I, and professionals like me, are supposed to survive on $6000 year! No wonder employment opportunities are limited!

My question is – Deaf Australia, Deafness Forum – This is clearly a crucial policy area that will lead to better employment outcomes for Deaf and hard of hearing Australians. Are you working together to bring this to the attention of the Government. Are you partnering People with a Disability Australia, Australian Federation of Disability Organisations or our rapidly expanding and increasingly wealthy Deaf Societies to do something about this? Hmmmmm?

Our NDIS is a mess. Deaf and hard of hearing participants have to jump through hoops to get basic safety technology. In some cases they are being denied interpreting. In some cases, unless they ask for it, Local Area Coordinators and planners don’t even raise the fact that they are entitled to it. Hard of hearing people are being told that Interpreting and Translating funds do not cover captioning (This is false.) Deaf and hard of hearing participants are CALLED on the phone by the NDIS everyday. When they don’t answer, they get a letter some months later asking them to contact the NDIS and that their already inadequate plan has been rolled over. They cant get hearing aids that they need. Parents that choose Auslan for their kids are being told that they cant have Auslan training because thats a parental responsibility (Again false) What are you all doing to address this? Yes, YOU, the organisations.

Many of our state run deaf advocacy bodies are unfunded. State disability advocacy bodies have huge waiting lists because they cannot support all the people that need advocacy. What are Deaf Australia or Deafness Forum doing to work together to build capacity of our State based advocacy. Just yesterday a Deaf person contacted me because they had been denied interpreting by a large public hospital, allegedly because the hospital said that it could not afford it. They asked me, presumably at the hospital waiting room, if I knew what part of the “Disability Act” compels public hospitals to provide interpreting – There is a readily available policy in South Australia, available on the internet, that outlines the responsibilities of hospitals in this regard. I emailed them the link to it. The bit that Deaf people need is on page four of this booklet if you ever need it –

https://www.sahealth.sa.gov.au/wps/wcm/connect/38291aa9-cdce-44ff-8d2c-79504413950a/Directive_Equity_of_Access_to_Health_Care_Incorporating_Interpreting_and_Translating_Requirements.+V1.1.15.05.2020.pdf?MOD=AJPERES&CACHEID=ROOTWORKSPACE-38291aa9-cdce-44ff-8d2c-79504413950a-ny0-WqV

Who is helping the States? Why am I doing this work when funded organisations should be doing it? Where are the partnerships and campaIgns to address all of these issues? What are our orgs all doing together to raise and tackle these crucial issues. ( Please don’t tell me you are on 31 committees and attended 5 billion meetings last year, Ive heard it all before!)

So these are some of the things that I think need to be tackled and addressed. Possibly they already are and we don’t know about them. I looked at one organisations website and I could not even work out what they were doing, what coherent strategy they have, what they were wanting to achieve or even what their staff do. If you are working on these issues COMMUNICATE it to us! Get the community behind you! And most importantly – join forces and work together – FFS!!

That is all!

Blowing My Own Trumpet

Image is of a man with his legs crossed. He is holding A trumpet. caption read – Blowing My Own Trumpet.

Over the next couple of months I went to tell some stories about some of the unsung heroes of the Deaf and hard of hearing sector. Not the Deaf community, but the sector at large. You know there are people out there that slog everyday. They open doors for people with a disability and deaf people simply by taking on the world and winning. It is often not a great world. It is often not designed for people who are Deaf or hard of hearing – But everyday people take this world on and win. They do far more for Deaf and hard of hearing people than many others that actually work in the Deaf and hard of hearing sector – Simply by living and showing the way.

I thought today I would start with me. And why not? Im coming to retirement in a few years and looking back over some of the things that I have done, well it is a way of celebrating. You can all stop reading now if you don’t want to read what is essentially me blowing my own trumpet. I’ll enjoy it even if you won’t. ;-D

Back in 85, I was among the first intake of deaf students at Mt Gravett College of Advanced Education which is now part of Griffith University. The late and great Dr Des Power recruited us. Dr Power was a great believer in giving deaf people an opportunity to become Teachers of the Deaf. He did so despite many in the establishment not thinking it was viable. Indeed, some Teachers of the Deaf protested. They said it was not possible because deaf students would not be able to teach speech. Dr Power ignored them all. There are many Teachers of the Deaf who are deaf who owe their careers to him.

Sadly, I am not one of them. You see, apart from being a rabid party animal with poor study habits, I broke my leg three times along the way. Although I completed two years of practical work and 18 months of academic work I kind of knew teaching was not what I wanted to do. Perhaps breaking my leg three times was the way of the teaching gods telling me that it was not meant to be. Suffice to say that one day the realisation hit me that I would go mad in school full of children everyday of the year except holidays.

So I quit. Sharon Hyde, our tutor at the time, did her best to convince me to stay, Gary” she said, with more than a hint of exasperation, “…you should be doing this with your eyes closed. Why do you make it so hard for yourself” I can see my mother reading this and nodding her head vigorously in agreement. But no, I knew that teaching was not for me and headed back to Adelaide to study social work.

It was here the making of Gary the advocate began. I enrolled in Social work at the then South Australian Institute of Technology, now known as the University of South Australia. I met with the Disability Liaison Officer, Dick was his name. I wanted interpreters like I had in Queensland but Dick said there was no money for this. He said he could organise me a buddy note-taker.

Dick, bless him (not), promised me he would arrange this for me before my first lecture. He didn’t. Nor did he arrange it by my second lecture, or the third, or fourth … I was getting desperate. I did what I had to do. One day after the lecture I went up to the lectern. I grabbed the microphone and implored all my fellow students to sit back down as they rushed for the door. Thankfully, most of them did. I asked for some volunteers to be my notetakers. It was perhaps the first time I had publicly disclosed I was deaf. A big thing for me. I was 22.

Anyway, I got some volunteers. I was forever chasing them for their notes. I had to grab their notes and take them to Dick who would photocopy them (When the photocopier was working.) It was a hard slog. I have to tell you I hated study, and still do. The scars remain.

Social workers are bleeding hearts you know. I’d often be sitting in group work with no clue as to what was going on. Some bleeding heart, wanting to show the lecturer that they understood the concept of opening the gate, would inevitably beam in on me and ask – “What do you feel about this Gary?” I would go bright red and have to admit I didn’t feel anything about it because I had no idea what they were talking about. True story.

So anyway, buddy note takers didn’t work. Recording lectures didn’t work because Dick failed to realise that his overworked secretary could not transcribe the recordings fast enough on top of her work load. SO, I began my career as an advocate and began to lobby for interpreters.

I was lucky because I began working at the Deaf Society and my work colleague, Vanessa, assisted me to to set up a Deaf Tertiary Education Support Network. We had several members that helped us to lobby for interpreters at University and TAFE. I met with my MP, the head of school, attended disability network meetings, got nominated to the Premiers Disability Advisory Committee, had meetings with the Eduction Minister Mike Rhann and so on and so on. I wrote letters to the Dean, the head of school. asking for interpreters. Finally after six years we won! I and my student colleagues did countless hours of unpaid work to make this happen. Countless deaf students have benefitted since. We should all be proud for what we achieved! Unsung heroes, all of us.

Very early in my career I made a calculated decision. I knew that If I worked only within the Deaf Sector my opportunities and influence would be limited. I decided that for my own opportunities and to have maximum influence I needed to work the mainstream.

I am proud to say today that I have worked with all disability types, including mental health and the NDIS. Most important, by working the mainstream I have made the mainstream more aware of what deaf people require to be included in society. I take my hat off to the many deaf people who have done the same. Simply by being out there and doing this they create far more opportunities for deaf people than people working in the Deaf sector alone. (My opinion anyway)

It is hard for me to know where to start but I would like to talk about the work I have done over 15 years or so in the National Disability Coordination Officers Program. It is a body off work of which I am immensely proud.

The inspiration for this body of work was my time as manager of the Successful Adults in Life Program (SAIL). This is a time before the internet had the powers that it does today. This is a time when a video conference required copper phone lines. It was very expensive. Put simply you needed a lot of phone lines for a good picture and to get good bandwidth. To make it simple, one phone line would get you an almost static picture where movement was just one big jerky thing. Two phone lines could get you a reasonable picture but it was still jerky. Three phone lines could get you a reasonably fluid picture, but at $600 an hour it wasn’t cheap.

The SAIL project focused on developing positive mental health in young deaf people. It also helped young people who were Blind or had a vision impairment. It is a program I designed and established. A big part of the program was the use of deaf mentors to impart “Deaf Life Skills” to young deaf people. I am pretty sure it was Australia’s first formal Deaf mentor program and had the first Deaf mentor training package. It was good too. Dr Catherine Wilshire quoted the model as best practice at the World Deaf Mental Health Conference in Denmark. She even quoted me, a very proud moment.

Back in 2000 we recognised that deaf kids in the country were extremely isolated. I worked with Melissa Phillips (Grivell) who was a visiting teacher for the deaf and deaf herself. We identified a number of deaf youth in the South Australian Riverlands. We wanted to connect them in someway to deaf youth in Adelaide. ( I am a bit of a sook, I get sniffly when I recall this.)

What I did, and this is true, I said to Adelaide TAFE that I would buy them a BIG TV for their video conferencing if they could promise me a year of free video conferencing to the Riverland and Port Pirie. To my shock they agreed, but a maximum two lines only. Not perfect, but with a little innovation – workable. From this two things happened.

Firstly, we connected four or five deaf youth in the Riverlands with deaf youth in Adelaide. We used innovation, lipreading, interpreting, text, whatever we needed, to communicate. The deaf Youth of Adelaide and the deaf youth of the Riverlands met monthly and planned an end of the year formal at the the famous 262 on South Terrace.

They planned everything from the format, the food, the music , the accommodation and the travel for the Riverland deaf youth. The Riverland deaf youth stayed the Appartments next door to 262. If I remember, the Apartments donated the room for the night. It was an enormous achievement. I laugh at people who complain now that their internet is too slow.

The second project was a wonderful deaf girl and her family in the Port Pirie. She was very socially isolated. Her mother wanted her to have access to Auslan and the Deaf community. We set up a program for the girl and her mother. They attended Port Pirie TAFE and learnt Auslan through Videoconferencing. My wife, Marnie, taught it.

We also set up a Deaf Mentor program where she met three deaf female role models regularly just to talk about life in general and practice her Auslan. It was heady stuff and required a lot of patience because the picture was slower which meant the people involved had to sign slower. The young girl is now a wonderful and valuable member of the Deaf community. Those in the know will often see her beautiful signing on Facebook where she works tirelessly to make videos focusing on creating awareness about mental health.

It was 2001. It was heady stuff and awakened in me an awareness of the power of online delivery to provide support to people living in remote areas. It is all a bit ho hum now. Now we have Telehealth, video relay interpreting and a soon to be CONVO service that deaf people can access at anytime on their phones, iPad or computers. Back then, in 2001, people told me I was dreaming. They said the speed was too slow. Tellingly, they told me it was not possible to use nor teach Auslan in 2D. Boy, were they wrong.

I commenced the NDCO role at the University of Ballarat in 2003. I had spent a year in Alice Springs as a teacher aid for three deaf Aboriginal students while my wife progressed her career as a visiting teacher. I knew first hand how difficult it was to access supports in a remote area. Indeed, I was interviewed for the job by teleconference because every video conferencing facility in Alices Springs, including the hospital, was broken. I booked the one Auslan interpreter in Alice Springs who arrived late and had to leave early. Somehow I got the job.

So, I commenced the NDCO role in July 2003. I had a wonderful boss, Barbara Webb, who made sure I wanted for nothing. I was acutely aware that me wanting for nothing was extremely expensive. For example, a one hour meeting in Warnambool, an area I covered, cost almost $1000 in interpreting fees. This included the minimum two hour fee plus the time the interpreter was on the road which was charged at full cost.

I wanted to prove a few things in this role. This included:

  1. That Interpreting cold be delivered through the internet using a dongle (3G at that time.)
  2. That education could be delivered online through an interpreter and captioning.
  3. That Information could be delivered online and in accessible formats.

My goal was to demonstrate how much cheaper that It could be if you could cut out travel costs. I also felt that less travel would help to free up supply for a service that was already outstripped by demand.

In 2006 I worked with the great Alastair McEwin who was heading the Redfern Disability Legal Services. Alastair put a couple of his lawyers at my disposal to prepare a plain English version of the DDA Education Standards. I worked with Todd Wright and Marcel Lenehan, who was then at the Macquarie University, to prepare an Auslan version of the Standards. I worked with the University of Ballarat to prepare an audio version of the Standards as well. From all of this information we created one of the first examples of an accessible website – https://ddaedustandards.info/

This was updated in 2014 and signed by the wonderful Stephen Nicholson. Originally Todd Wright was the signer. I still think it is one of the best examples around of an accessible website. The original version of the website allowed the user to download the Vodcasts and Podcasts of the information.

in 2008 we produced an example of an accessible online learning platform. We produced an example of a hospitality course where information for the course was available in text, audio or Auslan. We produced a CD (remember those) that you could load up and a graphic of a mobile phone would come up. You pressed the various icons on the mobile phone to see how Auslan, audio or text could be provided for online learning. I still have not seen anything as good since even if I am biased.

And finally from 2009 to 2011 I worked with Auslan Services to trial providing interpreting through the Internet and using a 3G dongle. We trialled it with a deaf student it Ballarat where we used the dongle and a laptop so that she could access interpreting in class. It was far from perfect but we showed that it could be done.

We also trialled online interpreting on the big screen through the internet at TAFE in the Goulburn Valley. I produce an instructional booklet on how to do this by Skype including setting up optional audio for the interpreter. At the time you would be amazed at how many nae sayers there were.

We were pioneers in every sense of the word showing Australia what could be done. Two of my favourite things were a funny training video I did using green screen. I used a green blanket for the green screen and superimposed myself interpreting myself on a video of me cooking cheese on toast. My sons filmed me and everyone tells me they could hear them giggling in the background as my dog, Hermione, stole my cheese on toast that I deliberately dropped on the floor.

The second was a training video I produced with Len Bytheway. This provided a desktop example of a video that had captions, interpreting and audio description. In a world first, the audio description was captioned so that deaf watchers could understand how audio description worked.

These were heady days. I like to think that I had more than a little influence on how things are today, particularly as my work was promoted widely hrough universities and TAFE through the NDCO network and ADCET website. Take a look at the new ADCET website here – It is an awesome thing. (Nothing to do with me mind you, although you will find some of my work there including one of the first examples of an accessible Webinar. ) ADCET

So there you have it, 101 things you didn’t know about me. Im not just The Rebuttal man you know. Not just the man who is known for rocking a boat or two. These days, apart from continuing my work as an NDCO, I do a lot of voluntary work helping parents and deaf people challenge NDIS decisions.

I also help one or two people with workcover applications and negotiating better access in their workplace. This year I have estimated that I have done around $12 000 in voluntary work for these people. Money is not important, it gives me a great deal of pleasure to stick it up the establishment with them.

The Gary you never knew. Who woulda thunk? Stay tuned for the next unsung hero. Only here at The Rebuttal!

Guru Gary’s Guide to a Sustainable NDIS!

Image is of a bearded man representing and dressed like a guru. He is giving a thumbs up signal.

HAHAHHAHAHAHAHAHAHA…. Independent Assessments proposed by the NDIS, and the love child of former Minister Stuart Robert are dead. I would love to have been a fly on the wall when he received the news. 

On Facebook there is an oft shared video of Hitler losing the plot when he hears news that he doesn’t want to hear. People edit it to have captions that fit in with events of the day. Let’s replace Hitler with Minister Robert. He hears the news, grabs the side of the table, breathes heavily, shakes violently and utters these immortal words:

“ Independent Assessments – DEAD???? AGGGGHHHHHHHHH, who will stop these debased disableds spending our money on PROSTITUTES …… “

It is probably closer to the truth than we are all prepared to imagine. But getting back to point, Independent Assessments were yet another idea from someone that doesn’t get disability yet is in a position of power to make decisions about disability. 

The Government is trying to have us believe that the NDIS is over budget. This is part of their strategy to scare the populace into believing that the NDIS costs too much and is not sustainable. Indeed, they have form for this.

Charlton, writing in the Sydney Morning Herald on July 9th, lists a number of occasions when the Government has tried scare mongering about NDIS blowouts. Here are some:

  1. The now dead debate for independent Assessments claims a $10 billion blowout. The reality is that data shows that the NDIS is meeting all expectations and is not above what was predicted.
  2. Trying to make people believe that the scheme was servicing more people than expected when in reality it is actually serving less.
  3. In 2017 they tried to have us believe that there was a $55 billion shortfall in funding. At budget time the scheme had underspent by over $3 billion. The Government took that money to add to drought relief.

One could be harsh and say the Government outright lies about the real cost of the NDIS. Charlton is kinder and says they are not very good at forecasting. Charlton also suggested that the schemes Governance should be given to the Minister to control. Apparently, at the moment the Minister has virtually no power. Most power is centred on the Board of Governance and the States. It is very difficult for the Minister to override them. Given the Governments track record all I can say is, thank God for that.

However, the Government remains hellbent on reducing NDIS expenditure. We pesky disableds are expensive folk they think. This push to cut costs is not going to go away. I have, therefore, appointed myself as NDIS Guru advising the Government. Here is what I advise.

  1. Employ People that actually understand disability, have lived experience and have worked in the Disability Sector.

Just today a participant told a story on NDIS Grassroots about a conversation she had with a customer support person at the NDIS. He said he was very new. He previously was a bus driver. He had received one week’s training. There he was on the phones fielding questions about the NDIS. The person claimed he was hopeless. Had no idea what he was doing and that she had wasted her time. She was frustrated that the NDIS was employing people with so little knowledge.

Some time ago I wrote about La Trobe Community Health Services who are a LAC partner organisation. A friend of mine with lived experience, and imminently knowledgeable of disability issues, was declined a LAC role. In the rejection letter La Trobe stated that my friend was very qualified but got no cookie this time because, “… we are diversifying our workforce and targeting banking and finance.” (Yes, I saw the email with mine very own eyes.)

I worked at the Brotherhood of St Laurence and they also had a philosophy of employing people from diverse backgrounds. In my time I supervised people from marketing backgrounds, banking and finance backgrounds, a policeman and even teachers. Some of these people turned out really well but many, and I mean many, just never got it. Some of the plans they put out and some of the things they wrote were horrific.  No amount of training could bring them up to speed.

In the upper echelons of the NDIA the NDIS is led by an assortment of bankers and accountants, many who have no clue about disability. To be fair, the NDIA do target people with a disability for management roles. I know a few of these people who have left in disgust because they are not treated the same and their input was not given the same value.

I am a strong believer that a great way to save money is by employing people who understand disability and having them in places of power and decision making. This must include people with a disability. If you understand, you are more likely to make relevant decisions. As I have said often, you wouldn’t employ a nurse to be a teacher or visa versa. Yet for some bizarre reason a banker is employed in a specialist disability program.

On the ground, for developing and approving plans, you need people that get it. You need people that ask the right questions. You need people who have passion to develop a quality and worthwhile plan. Because when you support people with a disability you cannot cut corners in the name of cost. You cannot make it up on the run. 

Quality plans are a must!! Quality plans will save on reviews, save on time, save on legal fees and make sure more money is targeted where it should be – at people with a disability.

That workforce must be improved and one of the priorities should be targeting people with lived experience and who have a deep understanding and passion for disability. 

  • Raise the caps on employing people, employ more (Qualified and understanding of disability of course.)

Last week I met with a senior person in the NDIA. They were telling me that currently there are plans sitting in the system for months and not getting approved because there are not enough staff to meet the demand. 

My friend was telling me that there is a practice among some delegates of just clicking approval for plans that meet the typical support package (TSP). They enter the data in the system and the system generates a support package. This practice occurs because the delegates are either:

  • Stressed trying to keep up.
  • Don’t care.
  • Don’t get it.

When they approve plans that meet the TSP they often do this without really checking whether the plans are actually sufficient and meeting the participants goals. The end result? Shit plans that come back for review, further stressing the system and costing a shit load of money to fix-up

But wait it gets worse! Apparently, there are pockets around the country that are not so busy. So, the NDIA, in their infinite wisdom, decided they to have this sort of National Day. What happens, because there is such a backlog, they send plans to delegates all over Australia who are deemed, “less busy”

What this means is that delegates in Tasmania might receive a plan for someone in Cairns. The delegate in Tasmania might have no idea what is going on in Cairns or even whether the plan they are about to approve is actually viable given remoteness and different State setups. Likewise, someone in Alice Springs, not too busy, might get a shit load of plans from Broome. You get the gist.  It is an absolute recipe for disaster and often is.

The answer? Employ more people and people that actually know what they are doing! You will more likely get a good plan and a good decision that meets the participants needs. An absolute money saver in preventing reviews, complaints and legal challenges.  Try it!

  • Let need and quality not quantity and cheapness be your mantra!

One of the most frustrating things about the NDIS is its obsession with standard. They want standard wheelchairs, standard hearing aids, standard prosthetics and so on. They even have a sort of standard plan that they judge everything under. This is known as the typical support package (TSP). This is generated by the computer logarithm.  The TSP is very often inadequate.

The problem is that standard doesn’t meet everyone’s needs. If someone is an amputee and enjoys swimming and bike riding or perhaps hiking there are any number of clever prosthetics that will allow this to happen. They can be pricey but if it is what the person needs to meet the NDIS mantra of an “Ordinary Life” then it can only be a good thing. Not to mention the economic and community participation it promotes and the ongoing mental health and general health benefits.

But you see many delegates don’t think like that.  They see a price and a standard and they are often hellbent on sticking to it. (Probably because their director is insisting on it.) In the example above the person had an aging prosthetic that often fell off. The person could not leave their home. They had lost confidence and were depressed. When I left the NDIS area they had been trying for two years get what they wanted. I am unsure if they were successful in the end. All I can say is that the NDIS were hellbent on standard, cheaper and less efficient prosthetic that would not have allowed the person to do the things that they wanted to do.

In my time I saw people who had outgrown their wheelchairs. Or they had conditions that had deteriorated. They had specific wheelchairs that were recommended but were above the standard cost. They were often refused necessitating endless reviews. Sanity often prevailed and they got what they wanted in the end but not without a fight. 

I know one parent who tried for three years to get an adapted bike for her child. They were ultimately successful but it took three reviews and endless reports from physiotherapists and OTs to outline the developmental benefits of the bike. These reports actually cost tenfold more than the actual bike itself.

The reason that they gave for refusing. A bike was parental responsibility! I pointed out that most parents don’t have to pay $2500 to adapt a bike so that their child can ride with them and have an “ordinary life”. So, after endless reports, reviews and person hours at great cost, the NDIS agreed. But only if the parents would contribute the standard cost of a bike which was agreed to be around $250. 

The stubbornness to not give or see any type of logic of need in the quest for standard is costing the NDIS millions of dollars in report fees, legal costs and person hours. What is worse is that this stubbornness to stick with standard instead of necessary and quality is causing harm to many people with a disability, physically and mentally. It has to stop.

  • It’s an investment – SAVVY!!!!??

Minister Linda Reynolds, on announcing the demise of Independent Assessments made it very clear that the battle to reduce expenditure is not over. She claims there are people on the NDIS who should not be there and that they are increasing the costs. Probably, but there are an equal number who should have access to the NDIS but are denied. It works both ways. I will say this. If the NDIA continue to employ people that do not know what they are doing and do not understand disability this issue will not go away.

But you know, the claim that the NDIS is too expensive is bollocks. All I hear from our politicians is outgoings. We never hear how the NDIS also benefits the economy. I don’t know how many, but literally hundreds of thousands, possibly millions of people owe their livelihoods to the very existence of people with a disability. Paradoxically, Minister Reynolds is one of them at the moment.

Let’s believe for a moment that the Deafness Forum claim that 1 in 6 have a hearing loss.  That’s 4.2 million people in Australia. Buying hearing aids, being supported by audiologist, buying technology like audio streamers, Roger Pens, flashing alarms and so on.  Have you seen Cochlear’s share price, woooo hooo! A proportion of deaf people keep Auslan interpreters and captioners in a job. Throw in speech therapist and teachers of the deaf and you have a booming market that exists just because of people who are deaf.

Other claims are that there are 1 in 5 people with a disability in Australia. That’s less than the number of deaf people. I don’t know if the 1 in 5 accounted for deaf people or not but I do know 1 in 5 is a lot of people. Wheelchairs, prosthetics, allied health professionals, technology, home modifications, support workers and so on and so on. Again, a whole thriving economy.

Take disability out of the picture or reduce expenditure on the NDIS then a whole host of people are going to lose their jobs. A whole heap of business are going to lose their income, What’s worse, if we lose these people to the disability sector, support and services that are already stretched are going to become even more stretched. People with a disability will be in the poo, even more than they are now.

So, to you politicians out there and to you decision makers out there; investing more and not less in people with a disability is helping Australia thrive.  Disability is not a cost, it’s a huge and thriving economy. Our politicians and decision makers need to shift their thinking.

There you have it. Guru Gary’s four step process to making the NDIS sustainable. Summarised:

  1. Employ people that know what they are doing. Do good plans using people that understand disability. There will be more satisfied participants, less backlog in plans and reviews and less, absolutely less, legal fees. ( I would love the NDIA to be accountable and tell us how much they spent on legal fees last year.)
  2. Going cheap is making people with a disability suffer and it’s adding to costs through reviews and legal services. Try spending an amount that will really help and see how it cuts cost in people hours, legal costs and, more importantly, the human cost.
  3. FFS The NDIS is drowning and cant keep up with the work on its plate. EMPLOY MORE PEOPLE and EXPAND THE WORKFORCE. The lack of people power is costing money. (And for god sake, no more bus drivers, please!)
  4. And finally, you need us people with a disability. Without us a whole heap of people all over Australia are out of a job. Spend more and spend wisely and it’s not just people with a disability who benefit, but the whole of Australia!

That is all.

It’s Time !! The DDA is Dead!

Graphic is a cartoon of a man with a microphone screaming It’s Time!

Finally, it has been said publicly by lawyers that Australia’s Disability Discrimination ACT (DDA) is next to useless. I have long moaned, and I know I moan a lot, that the DDA is not worth the paper it is written on, let alone the data drive that it is stored. 

It seems an Alliance of Lawyers have agreed to this and are campaigning to have the law changed. A Twitter post from People with Disability revealed this:

An alliance of lawyers and community organisations has lobbied the Attorney-General to rewrite Australia’s disability discrimination laws after a court case made discrimination claims “near on impossible to prove.”

You can see the full media release at the following link – https://pwd.org.au/media-release-disability-community-calls-for-reform-after-discrimination-claims-become-impossible-to-prove/

It has to be said that parts of the DDA are actually quite strong, in my view anyway. I am sure many will disagree. For example, Premises Standards regulate how new public buildings are designed so that they have ramps, doors are wide enough, they have accessible toilets and so on. 

But even that is hard to fight if an organisation doesn’t meet the regulations. Why? Because the DDA is based on complaints and conciliation principles, but more on that later.

My biggest beef about the DDA is that it talks so much about Reasonable Adjustments. It’s a fine principle that advocates that people with a disability have the right to adjustments that can help them in a variety of situations such as work, education being involved in community activities and so on. But where it falls down is on that word “Reasonable”

This is my personal blog so sometimes I swear. If you are offended by swear words look away now or don’t read any further …. What the fuck is reasonable anyway? The idea of reasonable is totally subjective.  My idea of reasonable, for example, is nothing less than 100% access, unless it is physically impossible to do that or if the system is unable to supply. (Like we have run out of Auslan interpreters because the demand is so high.) 100% should be the absolute aim.

Now if you are an organisation, even filthy rich like many private Registered Training Organisations or Universities, you might say that you cannot afford to provide 100% adjustments and even none at all. This does happen, often. So, in the case of people who are Deaf and hard of hearing an org will flatly refuse to provide access on the basis of cost or will offer something else, like a volunteer notetaker. (Yes, this still happens.)

So, Gazzataz enrols in the Masters Institute of Business (MIB) to do his MBA. The ole MIB is big, it makes hundreds of millions of dollars a year. Ole Gazza asks for 100% interpreting. MIB raise their hands up in horror – “We cannot possibly afford that! We get no Government subsidies.”  They then ask if Gazza has the NDIS, so he can use his NDIS money instead to pay for the interpreting.

This is actually an adaption of a true story. So anyway Gazza has his NDIS review. He asks for interpreting so that he can partake in the course. The NDIS refuse!  They say education is a State Government responsibility under the NDIA agreement with the States.

Let’s take a breather here. I am sure the reader is horrified to know that all of this is happening. But it is a fight that people with a disability have every day. There are few things that we should note in this case:

  1. MIB are filthy rich and should absolutely cough up. I dare say they can write off the cost at tax time and reclaim most of it anyway.
  2. They are within their rights to say no. They can claim Unjustifiable Hardship under the law. They can be challenged, but more on that later.
  3. The NDIS is also wrong. The agreement to provide access to education covers only state funded organisations. Not private, who get no Government subsidies. The NDIS will also advise Gazza to go do a State funded course. This is unfair as it limits his choice and control and may actually disadvantage him if he lives in an area where the state funded course is impossible to attend. I raise these issues because there are some smaller providers who genuinely cannot provide and the NDIS, in my view, absolutely has a role to fill this gap.

And here is the big one – If Gazza believes that MIB have broken Australia’s “Disability Law” He has to complain. (Note the quotations, yes I am mocking.)

So, Gazza complains.he The next step is conciliation which is organised by the Australian Human Rights Commission.  Here is the catch, MIB can choose not to attend conciliation if they don’t want to. They can say,  “Sorry, there is nothing more we can do” Or they can say, “Sorry, we offered a volunteer note taker, and we think that’s totally a Reasonable Adjustment.”

They can attend the conciliation if they choose. They can make a counter-offer, like note takers, reduced fees, extra tuition, access to lecture transcripts – Any number of things that they might consider a Reasonable Adjustment. Gazza may or may not agree. So, If:

  1. MIB refuse to come to the table?  or
  2. Gaza and MIB cannot agree?

What next?

Well Gazza can choose to take MIB to court and at great expense. If we are to believe the Alliance of Lawyers quoted at the start of this article, then discrimination will be almost impossible to prove!

In the meantime, MIB have continued to make millions of dollars of profit. Gazza is stressed out and over a year later no resolution has been found and he cannot start his course. Employment opportunities have passed him by. If Gazza decided to go to court the whole saga will probably still be dragging on into 2025. Gazza will be out of pocket unless the court rules in his favour. In which case MIB probably will appeal and it goes on and on ….

This is what people with a disability in Australia must confront everyday as they try to make use of Australia’s almost worthless and useless DDA.

I for one am right behind the Alliance of Lawyers and every one of us should be. It’s something every single disability advocacy organisation should be behind and working on together … Be it AFDO, NEDA, Deafness Forum, Deaf Australia, PWD, PWDA … All of them need to get together and fight with this Alliance of Lawyers (Perhaps throw a reform suggestion about the NDIA in there too and their half-baked interpretations of their own legislation that many of them don’t even understand.)

It’s time for change. Disabled people have suffered enough!

A Saturday Sermon for NDIS LACs and Delegates!

Listen up, NDIA people and LACs. This is your Saturday morning sermon. There are some within who are embarrassing the good LAC and delegates who work in the NDIS space. This article is targeted at you! There are many people, planners and LACs who are excellent at their jobs. They understand disability. They understand the legislation and they assist participants to develop excellent plans.  This article is not about them and I thank those good ones for the effort they make every day, there are many.

Sadly, there is a lot of dross within as well and they undermine the efforts of these skilled and dedicated workers. So, in support of those skilled and dedicated professionals I present you this week’s Rebuttal. This Rebuttal is designed to educate the ones that consistently make the NDIS look pathetic, which it largely is not.

It started with a friend. A friend has a review coming up. She has a new LAC, which is not uncommon as staff turnover is high. She politely requested that the new LAC outline their experience of Deaf people and the Deaf community so that she could provide some constructive feedback to the LAC.  The LAC in question had sent her an email that I can only describe as condescending.

This seems to have offended the LAC somewhat. It seems that the LAC in question emailed their colleagues expressing umbrage at having to outline their experience. There seems to have been a round of emails amongst those colleagues. Unbeknown to the LAC in question these emails were also sent to my friend in error – There is one line that stood out – “My qualifications? Should I send her a freaking list”

So, my friend shared this response on Facebook and asked how she should respond. My suggestion to her was to respond using the word “freaking” intermittently throughout the response.  But I jest, this sort of attitude towards people with a disability by NDIS planners and LACs needs to be called and weeded out.

Suffice to say the LAC did indeed send a list of their qualifications to my friend. Extensive as they were, none of them suggested that the LAC understood anything about Deaf people or the Deaf community. This is what my friend had queried in the first place. 

I will say this, if you go to the doctor, you look on their wall to see what their qualifications are. These are usually proudly displayed on the wall along with any other specialties that the Doctor may have. This inspires some confidence from the patient to the doctor. It is, therefore, entirely understandable that a person with a disability wants to know if the planner or LAC understands their disability and needs.

This is part of why the disability community is so against the independent assessments. Mainly that the assessor chosen may not understand their disability. The assessor chosen may not understand their needs and as is possibly unable to carry out a proper assessment.

It is something that the Government is failing understand. The Government is falsely trying to convince us that independent assessments will lead to a fairer system. We all know that independent assessments are the Government strategy to wrest control from people with a disability. We all know the major aim of the assessments is to make drastic and unnecessary financial cuts to the NDIS.

But I digress.  If you thought that what happened to my friend above was bad, read this response to a Deaf person. The response below was an explanation for drastically cutting their Auslan interpreter budget. This was also posted on a Facebook discussion page.

NDIS funding of an Auslan interpreter / Video Remote Interpreting (VRI) is for where formal language is required, such as legal, financial or medical appointments. For adult participants, it is the responsibility of family to acquire appropriate language skills to facilitate communication with the family member. Community organisations have a legal responsibility to provide accessible activities, and may be supported by local councils, state government, or other community sources, to provide inclusive activities.”

I profess, it is a well written and officious explanation. At first glance it looks like it was taken straight from the NDIS handbook. It is not something That I ever saw when I worked there but the NDIS is a rapidly evolving beast. It would not have surprised me if this suddenly became law.

The problem is that it is all bullshit. I took the liberty to check with former NDIS colleagues, some who are directors in the NDIA to see if this was, in fact, new policy. It isn’t. It is just waffle that the delegate or LAC has made up to justify their decision. And here begins the sermon to the ignorant LAC and delegates within the NDIS who come up with this sort of crap.

  • Auslan is a language. A rich and diverse language. It is not something you learn quickly at the corner shop. It is an expensive language to learn and rightly so. One of the more isolating things about being Deaf is that people close to you who are hearing cannot communicate well with you. 

A valid and extremely powerful way to tackle the isolation experienced by people who are Deaf, who have hearing partners and friends that they have met in life, is to facilitate the learning of Auslan among them. It is a cost of disability. By facilitating the communication among family and peers it potentially reduces isolation, loneliness and subsequent mental health issues that can arise from such. Potentially it can increase independence and participation.  As such it fits well within the NDIS remit.

However, even though assisting close friends and family members to develop some proficiency in Auslan will help to tackle some of the social isolation issues, it does not make them interpreters. Nor should they be unless they’re qualified. 

Having them develop proficiency in Auslan does not negate the need to provide Auslan interpreters for social events like parties, funerals, weddings and the like. Auslan interpreting for Deaf participants are NOT just for the formal and legal needs of the participant – It is to address the social and economic participation needs of the Deaf participant. 

  • It is true that community organisations have a responsibility to provide access. However, there are many that lack the financial means to do so. They receive no funds from Councils or State governments to make their events/programs accessible. So, the local community hall putting on an art course, hosted by a volunteer, has no funds for interpreting. The local volunteer organisation that provides meals for the homeless has no funds for an interpreter, They are, therefore, unable to provide access to training for the Deaf volunteer and so on.  Deaf people have a right to participate in these things with full access. (After all, the NDIS is based on human rights principles, isn’t it???)

Provision of interpreting funds is to increase and broaden the types of community events the Deaf person can partake in. In this way it assists them to be active in the community both socially and economically. Check your section 34 of the NDIS ACT and you will see these are prominent aims of the ACT.

State and Council Governments provide access for events that they fund and organise, it is true. However, they don’t fund any of the examples I have given above.

I repeat to all LACs and delegates who do not do so, please read, digest and understand section 34 of the NDIS Act. It is your bible. Furthermore, there are operational guidelines that focus on what the NDIS will provide for participants who have communication needs. Read them, you will find them enlightening.

And finally, within the NDIA there are some wonderful Subject Matter Experts who you can consult who have an in-depth knowledge of Deaf people and the Deaf community. Please make the effort to consult them so that you get it right. And no, I don’t care if taking the time to do your job properly impacts on your KPIs.  A quality plan will save time and money in the long run – Try it!

That is all!

Doing the Maths – NDIS Logistics!

Picture is of Dr Spock, Caption reads – EE Winning This War, Highly Illogical

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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