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!!

 

An Uncomfortable Truth!

Image is of an evangelist with arms raised to the heavens. He is wearing a sparkly coat.

The evangelist was in full flight. “HALLLELUJAH”,  he screamed, ” Praise the LORD!” The congregation were in raptures. They swayed as one as they praised the Lord.  “Tonight”, said the evangelist, “…is a night for miracles.” The congregation screamed to the sky and weeped. “Come upon stage.” implored the evangelist, “… and I will heal you.” Bob in his wheelchair rolls up onto the stage, that thankfully had a ramp for him. Peter, who has a terrible stutter, comes up too. “What is wrong with YOU??”  asks the evangelist of Bob, perhaps missing the obvious. “I cant walk”, answers Bob. “What is wrong with you???”, asks the evangelist of Peter. “I. I. I I. cccccaaannnt sppppeeeaakk. wwwwweellll.” stutters Peter.

The evangelists asks the congregation to pray. Through prayer Bob and Peter will be healed. The evangelist beckons Bob and Peter over behind a screen so that they cannot be seen. The evangelists whips the congregation into a frenzy ….  “Oh lord, help Bob and Peter. Let Bob walk, let Peter speak!!!”. The eyes of the evangelist roll back in his head and he begins to speak in tongues. The congregation gasp. They scream to the lord to heal Bob and Peter. And then silence …. The evangelist falls to his knees, breathing heavily.

Slowly the evangelist rises to his feet. He raises his arms to the heavens.  “WALK”, implores the evangelist to Bob. Behind the screen there is a loud thud. The congregation gasp in anticipation.  “SPEAK!!!” screams the evangelist to Peter – and he speaks …. “Bbbbbboooobbbbbs. fffffaaalllllleeeen oooovvvvvver.”

It’s a bad joke, I know. Some may even be offended by it. But I’m sorry, this joke came to mind after seeing a ridiculous advertisement for hearing aids yesterday. Allow me to explain.

The NDIS has been a godsend for many people with a disability. For others it is less so. However, it is undeniable that many people with a disability have received immense benefits from the NDIS.

Deaf people have received interpreting money, for example. They use this money to purchase Auslan interpreters or even live captioning. They attend parties, weddings, funerals and even do short courses in things like gardening. Pre-NDIS Deaf people were often just isolated at events where members were mostly hearing. Those community courses, they could not attend because there was no access. Many doors have opened as a result of the NDIS. This is true of many other disabilities too.

One of the big things about the NDIS is that it has created a market. The market is made up of service providers who are all scrambling to convince people with disabilities to us their services over others. Some of the marketing tools are, to be frank, misleading and even comical.

The marketing ranges from the supremely negative to the sickly twee and revoltingly positive. The worst thing about  the marketing is that it is often disgustingly misleading.

The below is an example of more subdued advertising,

“With XXXX, you can get so much more flexibility from your NDIS package. You get to choose support workers that are right for you, to pursue your passions, achieve your goals ….”

I don’t have a problem with this really. I use it only as an example of the language that is used to try and convince  people with a disability to use particular services. It is a market after all, profit is the name of the game.

Then we have less ethical advertising. Advertising that misleads. Advertising that raises false expectations. Indeed advertising that is outright lies. Click on the blue text below. Click the back button to return to the article.

HEAR CLEARLY AGAIN

Cochlear are often most guilty of this when they promote the Implant  as a cure all for everything. They fail to highlight the enormous amount of work that one must do to receive benefit or, indeed, the fact that the Implant does not work for everyone. Don’t get me wrong, I know literally hundreds of people that have received enormous benefit from the implant. All I ask is a little bit of honesty. I see Cochlear like the evangelist, they almost raise false hopes and expectations. It is not healthy.

Then you have the out right negative, like the Prawn campaign:

Image is an attractive lady with a prawn behind her ear the represents a hearing aid.

This one paints deafness as a life sentence. It tells people that hiding your deafness is the way to go. That deafness is a thing of shame. It is ugly and must not be spoken of. The company misleads leads people into thinking that by having tiny wee hearing aids that no-one can see, that they will almost be hearing. Not accurate, not helpful and potentially extremely damaging to the psyche of people already struggling with their hearing loss.

And now to the subject of my ire and my cynicism,

Image is of a blonde lady with spectacles. Her hands are cupped behind her ears, fingers pointing up, she is smiling broadly. The caption says – I can her clearly now – It is an advertisement for a hearing aid provider.

The ad is disgustingly twee. I saw it and burst out laughing. After laughter came anger. Why??? Why must these providers lower themselves to such levels. WHY??? WHY do they underestimate the intelligence and ability of the paying public to see through this bullshit?  Why??? Why must they lie? Why can they not just say “ We have a range of hearing aids that might help you, come in for a free consultation.” Why??? Why can’t they just have a serious photo of someone consulting with an audiologist and looking at a range of devices. Why cant they have a disclaimer that says honestly “The benefits of hearing aids can very for individuals and may take some time adjust to.” Why must they sensationalise things and insult all of our intelligence?

The answer is probably money and the desire to make more of it. I find it really sad and insulting. But sadly, for all its benefits, the NDIS has created a world where people with a disability have lost their dignity and are just seen as the source of enormous profits.

There are many other providers that advertise in a similar way. For fairness I have provided further samples below. None come close to being as bad as the one above. All are misleading or negative, even ageist.


 

 

 

 

 

 

 

 

 

The evangelist joke that I began this article with is closer to the truth than we all want to admit. Hysteria and sensationalist rubbish abounds.

That, my friends, is the uncomfortable truth!!!

 

Australia’s Shame!

Graphic is an art work of a person with their head bowed in shame. Their hair hangs down and Deaths sickle is raised above their neck

I walked into the classroom and she flashed me a beaming smile. She finger spelt her name and showed me her sign name. Her signing was a bit rudimentary but easy enough to understand. She was at a school in remote Australia and I was her support. She was tall and graceful, even regal. There was an evident gentleness about her. I had just taken a break from full-time work so that my wife could further her career. I was the support person at the school and she was one of the first deaf Aboriginal people that I had ever supported.

Amanda sat with Carly, the other deaf Aboriginal person in the class. They sat together at the back. In the morning the schools home class got together. The class teacher would update the kids on the recent happenings, changes and events of the day. There was no interpreter. Being deaf myself meant that I could only pick up some of what was being said. I did my best to relay this to Amanda and Carly. They didn’t get much really.

At 9 o’clock it was time to go into classes. I expected to follow Amanda and Carly into the class but no. The classroom teacher came to me me and gave me the days lesson. I was to take Amanda and Carly into a room and teach them. I have half a teaching degree but I am not qualified. Nevertheless, I found myself as their teacher.

During the day no-one spoke to Amanda or Carly. Not the predominantly white students and not the all white teachers. Amanda and Carly sat together or sat with me. They gossiped and giggled as teenage girls do. The language of the two Aboriginal girls was delayed. Their conversations were very rudimentary. They would see a boy and girl together point, cover their mouths and giggle. Carly spoke often about her hometown. She would tell me several times a day where she was from. I from XXXXXXX, I back soon. Home, yes home, soon” (I have deliberately not said the name of the town so as to not identify who Carly really is.)

Carly hated school and it was her intent to go home. She had a rich benefactor who was head of a mining company. He apparently paid for her to attend the school. He paid her flights, accommodation and other costs. One day the man visited the school. The school made a big song and dance of the visit. They put on a morning tea for him. Carly was nervous and worried. When the man arrived she bowed her head and would not make eye contact. She followed the man into the room looking down at her feet. She would give him his tea and some food, never once looking at him. I found this really concerning and bizarre.

I am a white person so cannot really speak with any great expertise about the customs and culture of Aboriginal Torres Strait Islander communities. At any rate across the various communities and nations the customs and culture will vary. I do know that averting the eyes in some Aboriginal Torres Strait Islander communities can be seen as a sign of respect.  The mining head was at least 60, Carly was 16. She used to tell us how she was going to marry him and have his babies.  I do not know what went on, but I do know I felt very uneasy about her relationship with this man.

I remember looking forward to my working day with Amanda and Carly. I would walk into the room their faces would light up. Amanda would sometimes bring me food from her home to try. Kangaroo tail and goanna. I found the Kangaroo tail incredibly tough to eat. As I gnawed at it Amanda giggled uncontrollably.

One day we were out on a sports trip. These trips usually involved Amanda, Carly and I sitting together. They never mingled and we would just chat until the event was over. I suppose people would say it was my role to facilitate interaction, but hell I am deaf too – there was not a hell of a lot that I could do. No one really cared about them anyway. We came back from the trip and Amanda’s family were gathered around a truck. Amanda ran off to see them. She came back wailing and crying. She held her head in her hands and rocked back and forward.

I asked her what was wrong. She just signed dead, dead, dead.  I asked her who had died and she did not know. She was just mimicking the behaviour of her family members. They could not really communicate with her either and Amanda had no idea who had died. Nevertheless, she mourned and grieved in support of her family.

I vividly recall teaching Amanda one day. I was trying to teach her basic fractions. I was using pie charts and unit cubes and trying to link portions to the fraction written on the blackboard. Amanda had a defensive mechanism that when things got hard she would cry. I tried to ignore this and keep her on task.

As I was teaching her the head of the visiting teacher service walked in and saw Amanda was frustrated. She beckoned Amanda and encouraged here to sit on her lap. She cradled Amanda’s head on her shoulder. She admonished me. Told me to stop. Told me that Amanda had no need to learn fractions because she would just live at home and raise children. I was told not to waste time on things that would not be needed. Amanda was 17 years old.

I worked with Amanda and Carly for only one year before leaving to take up another job. I never saw them in person again. From time to time an Aboriginal friend who supports Amanda would contact me to let me know how she was going. Amanda apparently remembered me fondly. I am glad that I at least had that positive impact on her.

About a year ago as I was getting out of the car, 17 years on from when I had last seen Amanda, my phone rang. The Aboriginal support person was calling me on FaceTime. I answered and the person was with Amanda. It was a beautiful surprise and I had a chat with Amanda. Her smile was as broad as ever. Her natural grace was still evident. I spoke with Amanda who told me she had been in jail, she was a bit frightened and my Aboriginal friend was helping her.

It transpired that Amanda had entered a community where she was not allowed according to the Lore. Of course Amanda would have likely not understood this. She had been confronted and in defending herself she had assaulted someone. I am not sure of all the details but I do know that it was considered severe enough to lead to her spending some time in jail.

I know that she had to go to court with very little support. She went to court with no understanding of the process nor the likely outcome of her court appearance. The end result was that she ended up in jail.

This is, apparently, not uncommon. Many Aboriginal Torres Strait Islander people in jail are deaf or have disabilities. They go to court with little support or understanding of the process. Many are unable to explain their actions. They are unable to say, for example,  whether they acted in self defence. They are unable to explain that they have little or no understanding of the law or Lore. They have no defence and no support. Yet, they end up in jail.

Just recently I received an update about Amanda. She has been diagnosed with an acquired brain injury, probably as result of numerous head injuries from assaults. She also has Frontal Lobe Atrophy brought on by years of alcohol abuse going back to her childhood. She is losing her short term memory. She now has behavioural issues and will attack people she sees as a threat. I am told that she carries bricks in her bag as a means of defence because she trusts no-one. She has to go to court again with the threat of jail – despite all of her various disabilities.

This is a far cry from the gentle, graceful, regal young woman I once knew and for whom a smile was never far away. I am told she remembers me and sometimes asks about me. I hope she remembers me fondly and that the memory gives her some comfort in her current dreadful existence. I weep for her.

As for Carly,  she apparently lives on the streets in a remote outback town. In the last few months she has been raped 7 or 8 times. She never did marry the mining head, who quite possibly abused her too.

It is worth noting that despite being only 3% of the population Aboriginal and Torres Strait Islander people make up 29% of people in Australia’s jails. They are more likely to be fined and pulled over when they are driving and then end up in jail for not paying the fines. It has been said that 90% of Aboriginal Torres Strait Islander people in jail also have a disability. Many of them deaf!

Amanda was one of them and maybe will be one of them again. How many more Aboriginal Torres Strait Islander people like Amanda are in or will end up in jail??  This is Australia’s shame!

Footnote:  Amanda and Carly are real people, their names have been changed to protect their identity.