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!

Same Shit Different Barrel ….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Triggers!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Australia’s Shining Light

Picture shows a person walking to a tunnel of light.

Linda Reynolds, Minister for the NDIS, was on TV today. She was being interviewed about the NDIS. The basics of what she said was that the NDIS is bloody expensive and we gotta stop spending so much on it. Yeah, you know people with a disability, bugger em, they are expensive folk. Lets feed em three times a week and take em to the park once month. That’ll do. Cos otherwise Australia is gonna bleed, and we cant have that. Can we?

In the same breath Reynolds said that Australia was a world leader in disability support. The scheme was brilliant she said. It’s a scheme that no other country in the world has. We disabled are so lucky to live here – But apparently the Govmint has a responsibility to the Australian tax payer … Gotta spend less so that those bloody corporate tax cuts can be paid.

So, the NDIS is world leading? Well it would and should be. I am a great fan of the concept. I want it to work, I really do. But it won’t work if people keep calling it a cost and not realise that it is an investment that reaps benefits. Not just moral benefits, but financial as well. Most of all it cant be world leading when it employs strategies, processes and people that are so bizarre, Monty Python couldn’t make them up.

Today I read an article about Western Australian lawyer, Tom Monks. Mr Monks is an amputee. He lost both legs in an accident when he was two years old. Long time ago! Monks was able to be accepted as an NDIS participant easily, but like for so many others, getting what he needs from the NDIS is an arduous adventure.

So last year, because of COVID, Monks didn’t spend as much of his package as he normally would. This was common for lots of people with a disability during Covid. Monk claims that at his review he was told bluntly that the NDIS would take some money away cos, clearly, he didn’t need it.

First thing the NDIS did was take away his travel allowance. Didn’t spend much of it so obviously not needed. Apparently Monks was told he has a wife, so she can take him everywhere. Monks is a wheelchair user and needs accessible taxis. It’s an expensive business. But you know, following Reynolds dictum, gotta watch the pennies, so this has gotta go!

It gets worse. They took away his wheelchair maintenance. They took away his physiotherapy and pain management budget which allow him to maintain function. So like many other people with a disability, Monks had to do a review to try and get back his funding. Three months on, god knows how many NDIA person hours , Monks had to prove he had no legs and indeed was in need of the stuff that they took away.

Maybe they thought his legs would grow back, who knows? They are a world leading scheme after all, they must know what they are doing. (As a footnote, Centrelink told Mr Monks he wasn’t disabled enough and asked him if his amputation was permanent – I wouldn’t put it past the NDIS to do the same.)

You think that was bad? Well the Guardian printed a story of a young girl who had one of the NDIS’s much vaunted Independent assessments. You can read about the Girl who uses wheelchair deemed to have no mobility concerns by NDIS independent assessment.

Girl in question, Eliza, lives with an intellectual disability and physical disabilities. She apparently has brittle bones and can break her bones easily. When her condition is at its worse she requires the use of a wheelchair. One might think, like Monks, that the needs are obvious. But Eliza and her family had to wait 16 weeks for the assessors report … Thats four months or one third of a year.

Some how, in a way that only an NDIS process and worker can do, young Eliza was deemed to have no mobility issues, none! As Eliza’s mother said, “I would imagine if I’m asking for a new wheelchair for Eliza because she grows out of the current one, they’re going to look at the independent assessment, and it says she doesn’t have any mobility issues,” Of course the NDIS claim that one answer does not make up their assessment, and that the mobility needs would have been captured in other areas of the assessment. You reckon? Nah, the NDIS have form, this is something they will latch onto to save money. They really are that bad.

And you know, none of this surprises me at all! I worked there and I can tell you I still have nightmares about some of the decisions that the NDIS made to save money. I once planned for a participant who had a genetic condition that led to multiple disabilities, – learning and physical. The girls first plan was pretty good. There was funding for physical needs, cognitive needs. personal care and so on. The parents were lovely, I loved visiting them.

A year on was review time. We got reports and recommendations from therapist and put forward a proposal. On the system there were multiple reports from the past indicating the girl has different disabilities. We put in the scheduled review expecting everything to be approved without issues. We were shocked when the girls funding was cut in half.

The parents were beside themselves. I got straight onto the delegate that had made the decision. “Well”, said the delegate, “… the system says she has an intellectual disability and none of the other disabilities are listed, so we removed that funding.”

I was livid. I reminded them that there were many reports that were stored on the CRM and that these reports list all of the girls disabilities and needs. These reports outline all of the girls therapy and care needs. I asked the delegate if she had actually read them. She had, apparently, but because only intellectual disability is listed s a disability on the system the delegate decided, in her infinity non-wisdom, that these needs were not valid.

Six months it took to get the other disabilities listed for this girl. SIX MONTHS. They made the family get all new diagnostic reports and refused to consider the information that was at their disposal in the system. Six months the family struggled for – SIX MONTHS – Because of a heartless delegate on a power trip!!!

I am sure that none of this surprises anyone. I assist a few deaf people with the NDIS. I help them with reviews and represent them. I send emails with the reviews that clearly state that I am deaf, to email and not call. Inevitably two or three times a week I will get a call that tells me “number not listed”. I know it is the NDIS because the NDIS do not want their numbers traced lest they get harassed by irate NDIS participants (True story) So you cant call them back.

The NDIS will continue to ring me for a week or so and then they will send me n email that says, “… tried to call you, please call us back!” Im sure readers feel my pain and frustration. We really should not be surprised given that Hearing Australia, our largest provider of hearing aids and hearing services, ring up their deaf participants for appointments. I wonder if they still call out names in the waiting room and then cross out the client as a non-attendee because they didn’t hear their name called. (Yes this has happened.)

So NDIS, the world leading scheme of disability experts providing supports that no other country does. The only scheme of its type in the world says Minister Reynolds. THE ONLY SCHEME OF ITS TYPE IN THE WORLD!! All I can say to that claim is – Well thank fuck for that!

Second Best

 

Image shows a young girl from the 1950s with what looks like a runners up trophy.

The Disability community fought hard for the NDIS. I remember attending many rallies. I responded to many petitions, completed many surveys and raised the issue of the need for the NDIS through my work. I remember the then Chair of Australian Federation of Disability Organisations, Dean Barton-Smith, at one rally pointedly stating to the crowd. “The time for talking is over … “ Eventually the disability community won and the NDIS came to reality in 2013. It was a win for the ages.

How wrong we were. The NDIS was created because it made economic sense. By introducing the NDIS and investing in disability, people with a disability could finally be equal members of our society. The investment in disability was to be an economic boon. Not only would it mean that people with a disability could finally get out into the community but their carers and families could also be supported to get back to work through the funding of additional support. Jobs would be created through increase demands for support, care and technology. Being able to get out into the community would mean people with a disability could spend money participating, going to restaurants, working and studying, just like everyone else.

Indeed the initial modelling of the NDIS highlighted this fact. The late and great, Mark Bagshaw, used to say that simply by ensuring disability access was an integral part of planning for the introduction of new infrastructure to society such as planes, trains, buildings etc so that they were accessible for people with a disability, the economy could benefit to the value of $43 billion. That was in the late 90s and early 2000s. How much would it be now?

The NDIS was partly created for this reason. Investment in people with a disability, PROPERLY, will benefit the economy. It does this by making sure people with a disability can participate. It does this through creating jobs and opportunities. Governments are always happy to spend billions of dollars on roads because it creates jobs and stimulates the economy. For some odd reason when it comes to investing in a similar way in people with a disability its no longer an investment. It becomes an unwanted cost.

It shows just how the Government really values people with a disability. They think people with a disability are second best. This is shown in how the NDIS makes decisions. The NDIS do not want to invest – They want to make it as cheap as they possibly can. They think that in this way, by spending less, the scheme will be sustainable. The reverse is actually true. I want to highlight here some glaring examples of just how the NDIS views second best as BEST!

When I worked as a Senior Local Area Coordinator I worked with a number of amputees. One lady I worked with had a lower limb amputation. She needed to upgrade her prosthetic. Hers was very old. It was worn out and sometimes fell off. She lived in a house that had a fairly steep drive way. More than once she had been walking down the driveway and her prosthetic had caused her to fall as it was no longer stable. A few times it had, apparently, fallen off all together while she was out shopping. It had got to a point where she feared leaving her house. It was causing her extreme anxiety.

When I met her she had been trying to convince the NDIS to fund her a prosthetic that had a microprocessor. She showed me a promotional video of the prosthetic. It showed a person being able to walk over uneven terrain. It showed them riding a bicycle. There was also a kind of secondary prosthetic that could be worn when swimming.

I am no expert in prosthetics. I am also aware that sometimes companies can exaggerate benefits. I also know that there are some disadvantages that include maintenance, charging and weight. Watch the video below. It will give you a small idea of what such prosthetics can do.

 

The participant was well informed. She wanted a microprocessor prosthetic. Indeed she had numerous reports from various OTs that also recommended the prosthetic as most suitable to her lifestyle. The NDIS wouldn’t approve it. They wanted her to have a cheaper fixed type prosthetic. Whoever their expert was didn’t feel the benefits of the microprocessor were enough to justify the cost.

The participant was adamant. This is what she wanted. She had the evidence of the benefit and she had jumped through every hoop that the NDIS had asked her. But the NDIS still refused. The participant was virtually housebound because the prosthetic that she had was unsafe. Her anxiety was so high that she feared leaving her home. This had been the case for over two years. Still the NDIS refused.

Anyway, she got fed up in the end. She emailed everyone from the NDIS minister, to the Prime Minister, the local MP, the media and god knows who else. She created a bit of a shit storm. I left my role shortly after, I still do not know the outcome. But I do know that she was virtually housebound for two years because the NDIS wanted the lowest cost possible rather than the best possible benefit. Second best is what they wanted. Second best is how they treated the participant.

I do not understand this approach. What I see is a technology that can assist the person with a disability to get out into the community. I see a technology that will enhance independence. I see a technology that will allow the participant to do things that they want to. I see a technology that will enhance their self esteem and self image. Further, by investing in this technology so that more amputees use it it is likely to see costs come down and the technology improve over time. But not the NDIS – They see only cost and how they can reduce expenditure as much as possible.

More recently Deaf people and people who are hard of hearing have been fighting with the NDIS over visual alert systems. Many prefer and are recommended a system called Visualert. I have never actually seen it myself but I know many want it. If you watch the video below, you begin to see why. (The captions send you to automatic French captioning , don’t ask me why.)

 

In Australia smoke alarm legislation is very strict. For hearing people the alarm must be heard from wherever they are in the home. The alarms must be placed where they are likely to be heard. If you have a two story home, alarms must be upstairs and downstairs. If your bedrooms are a long way from living areas it is recommended that alarms be placed in bedrooms or at least outside bedroom door. Alarms must be hardwired and have back up lithium batteries should the power fail.

It follows that Deaf people and people who are hard of hearing need a similar system. It needs to be hardwired. It needs to be seen wherever you are in a home – Outside and in. It cannot rely on batteries or remembering to wear pagers. It must alert you wherever you are – living room, kitchen, bedroom, toilet etc.

Visualert can be connected to other things such as the doorbell, baby cry alarm or security systems. If you are outside the system allows you to know that someone is at the door. If there are intruders you can be alerted that someone is prowling outside and so on. Unlike hearing people, Deaf people and people who are hard of hearing cannot hear their dogs bark or if there is a disturbance. Like hearing people Deaf people and people who are hard of hearing want to feel secure in their own homes.

So OTs and audiologist around Australia have begun to recommend the system because it keeps Deaf people and people who are hard of hearing safe. The NDIS is refusing them. They want them to install cheaper systems such as the Bellman system that rely on batteries, pagers and WiFi. These systems do not meet the same strict safety requirements that hearing systems must meet – No matter, we are just Deaf or hard of hearing – We are second best so second best is fine!

I don’t know about you but I am tired of our government making decisions about the NDIS that are based purely on cost. You see spending less may not actually lead to the NDIS being sustainable. It may actually lead to NDIS packages for people with a disability that are next to useless and money being wasted. Worse, it may not actually improve their circumstances or ability to participate. Or indeed, as we have seen, their safety.

I do not know about you but I am tired of being treated as second best – Nor do I want second best. A second best NDIS is of no use to anyone!!