Working for Free!!

exploitI was at a conference today. It was about disability and employment. It was a flash gig too. There were reputable key note speakers. There was live captioning. There were interpreters. No expense had been spared. No doubt the key note speakers received a fair remuneration for their time. Outside there was a flash lunch. Salmon wraps, finger food, fruit juices, brewed coffee. It was the bee’s knees.

The second session had a panel. On the panel were three people who had a disability. They were recounting their time as students and their journey into the workplace. They were providing valuable insights into the barriers that they had confronted. They were providing firsthand knowledge of the strategies that they used to disclose their disability. They described in detail how they went about getting the reasonable adjustments that they required. To my mind they provided information that the flash keynote speakers had not. At the end of the panel discussion they were all provided with a gift. Despite having provided the most valuable information of the morning they were not financially reimbursed – They got a gift! It seems to me that too often people with a disability are expected to give their time FOR FREE. They are not valued in the same way as others

Don’t get me wrong its not about money all the time. I happily give my time for free and often. As an example I offer my time and skills to Deaf Sport Recreation Victoria on a voluntary basis. I do so because I see DSRV as a very important organisation. They get just around $15 000 per year from the Government. They are supported by Vicdeaf very well too. DSRV not only coordinate deaf sport and recreation in Victoria but they are also constantly reminding the Victorian Government of the needs of people who are Deaf and hard of hearing in relation to sport and recreation. They carry out an important role on a shoe string. I recently became President by default, thus necessitating more of my time – Onwards and upwards I say.

In the area of disability there are many volunteers. There are a myriad of roles that volunteers take on ranging from manning cake stalls to sitting on Boards and committees. Volunteers are everywhere. Without volunteers many organisations that support disability would fall over. In fact Pro-Bono Australia claim that volunteers contribute more to the economy than the whole of the mining industry. It is estimated that volunteers contribute a staggering $200 billion to Australia’s economy.[1]

I’m proud to be a contributor. I am not writing this to make myself look like Father Theresa, rather I write it to highlight the value of volunteers. In the deafness area I would estimate that volunteers contribute to over 75% of what happens in the Deaf community. There are people running sporting groups, sitting on boards, running cake stalls, selling sausages at Bunnings – Hell, the enormous job of organising the Australian Deaf Games is done almost solely on the backs of volunteers. It is fantastic.

BUT! There are times when volunteers are truly abused and undervalued. I have a good friend who is Deaf and who is immensely qualified and respected. This friend can earn a good buck on the public speaking circuit. I have used the friend in my work to run workshops. I always get mates rates. What might cost $1500 elsewhere I will get for $750. It is worth it because the said friend is highly professional and organised.

This friend is sometimes asked to support Deaf sector organisations. In the past the friend has given much of their time to many different causes. It got to a point where the demands on the friend’s time were great. Consequently my friend would sometimes ask for payment for services. This would only be from organisations that had the money to be able to pay. A smaller organisation like DSRV would never be charged.

But larger Deaf organisations hardly ever pay my friend. It’s possible that they never have. The said friend is asked to work with kids, set up training or lend their name to a cause– a whole host of things. But never is the friend offered payment. For some reason, perhaps because the said friend is deaf, my friend is expected to contribute totally selflessly to the cause. What is it about being deaf that makes a Deaf organisation assume the deaf person will always be happy to offer their time for free????

Another good friend is an incredibly talented artist and photographer. I cannot say too much about him without giving up his name. Suffice to say his work as a photographer is revered in the industry. As an Artist he OUT THERE and very creative. He bemoans the fact that whenever he works with Deaf organisations that they never offer to pay him. Rather they expect him to work for free. The most patronising thing that these organisations can do, said my friend, is give him a gift. He is a professional, and an immensely respected one, yet hardly ever do Deaf organisations or other organisations that service the Deaf sector offer payment for his services. It is almost like there is an unwritten rule in the Deaf sector that Deaf professionals who are not employees will work for nothing. My friend, in desperation, asked me of himself and his relationship with the Deaf sector – “What am I, a NOBODY?”

Last week there was a heated debate on Facebook. A person associated with a reputable Disability Peak bemoaned the fact that the $200 000 plus that the Peak received each year was not enough for the Peak to be able to do the job. This person said that people with a disability should be less critical of their Peaks and should offer time as volunteers to help the Peaks achieve their goals.

That didn’t go down too well with the professionals with a disability who were taking part in the debate. The person who made the statement received a barrage of criticism. It was pointed out that there were organisations that received absolutely no funding that were achieving the same things that were expected of the Peaks. It was pointed out that the said Peak did not satisfactorily engage with its members so why should its members offer their time for free. But mostly it was pointed out that people with a disability should not be expected to carry organisations that could not use their funding efficiently. Said one participant in the debate, “ There is a lot you can achieve for $200 000 that you don’t, so don’t expect us to carry you over the line.”  Or words to that effect.

The bottom line is that Australia has one of the worst employment success rates for people with a disability in the Western world. This is shameful for such a rich country. Disability organisations and the Disability sector, rather than expecting people with a disability to work for free, should be leading the way. Expecting people with a disability to work for free, as they often do, simply shows how much they undervalue the contribution and skills that people with a disability can bring to the sector.

The age of the freebie is over. People with a disability are worth it and deserve to be paid for their knowledge and skills.  As a good friend of mine with a disability said last week – “If one more disability organisation offers me a free movie ticket for my time I think I will scream.”  If I were her I would prepare to scream a lot more in the future.

[1] http://www.probonoaustralia.com.au/news/2012/08/volunteers-worth-more-australia-mining#

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Auslan – Who does it belong to?

imagesCARGY3WP“There is no such thing as the Queen’s English. The property has gone into the hands of a joint stock company, and we own the bulk of the shares.” 

Mark Twain

Who owns Auslan?

Last week a good friend who is deaf visited me from America. He is an Aussie expat and works at Gallaudet. He was never totally immersed in the Australian Deaf community and his Auslan is rudimentary. Since commencing at Gallaudet he has had to become more immersed in the Deaf community. He has had to learn American Sign Language (ASL) and fast. He comes back to Australia every six months or so. Inevitably we catch up for coffee and he shows off his ASL. He demonstrates his dexterity for the one handed alphabet and throws in other signs like good, man, because etc – all in ASL. I am lucky he is easy to lip-read, otherwise I wouldn’t understand a word he says.

He was telling me that at Gallaudet he has a deaf mentor. The mentor and he talk about all things deafness. His mentor apparently mentioned that, even at Gallaudet, there are very few deaf people that use pure sign language. Most, apparently, use a combination of ASL and English. This is also my own observation, that most of the people I know who use Sign Language use a combination of Sign Language and English.

Sign language has a unique set of rules that involve not just signs, but also space and direction and facial expressions. There are also some odd verbalisations. For example the sign that is used to indicate that an explanation or instruction has been understood is signed while at the same time making a sort of sound that goes something like ‘puh’. Even though there are some unique idiosyncrasies related to Sign Language I wonder if Sign Language, in its purist form, actually exists?

Most people that I know, who are part of the Deaf community, did not get introduced to Sign Language until a later in their lives. Their parents were usually given expert advice to teach their kids to speak, to use residual hearing, to not sign and so on and so on. Some of these people struggled in mainstreamed settings and found themselves at a school that provided support to deaf students. The age that they get introduced to a deaf support unit varies. In my case I was 14.

My first introduction to sign language was Signed English in 1978. Signed English was and is horrible and awkward. For those of us who remember – try signing do, done, does, to and it. I guarantee you will feel hand cramps coming on very soon. The biggest issue with Signed English was that many signs made no sense conceptually. I don’t know the theory behind it but some words just do not make sense visually. Buy, by and bye … All sound the same but visually are represented differently. You might be able to use one sound such as BI to represent all those words and the listener will know what you mean based on the context of the conversation but visually it makes no sense at all. If one was to sign, “I went BUY the shops” it would make no sense. This is why with Sign Language the right visual context can be crucial.

Many of these kids from the seventies who were educated with Signed English are now a large part of the Deaf community. As they began to join the Deaf community they brought with them their own versions of Sign Language that had been influenced by their education. Today, I often see smatterings of Signed English intermingled with Auslan. The Sign ‘IT’ is most obvious. In Queensland there are a group that add “S” to the end of words to show the plural. They will sign “DOG” then sign “S” to signify the plural. Horrible as Signed English was and is, it is ironic that some of it has become ingrained into Auslan.

Sign language, like English, is not immune to influence. It evolves and adopts other languages naturally. This includes other sign languages and English. American Signs have become prominent in Auslan for example – politics and parent with the American P are common usages. Then there are new signs that are added all the time, particularly where new technology is involved. In recent years we have added signs like iPad, mobile phone and other computer terminology.

Hell, a segment of the Deaf community didn’t like the sign for disability so they contrived another one so that it was visually more representative. The old sign was sort of like a person hobbling on gimpy legs. This segment of the Deaf community decided this was not fully representative of disability so they changed it. The current sign is one which is a D that runs across the fingers of one hand signifying Disability as several types.

In more recent times segments of the Deaf community have also changed the sign for rights, as in human rights. It used to just be rights – as in the sign right or wrong. Now it is a completely different sign that is almost like one hand making a chopping action across the palm of the other hand.

I am not sure who makes the decision to change these signs. As far as I know there was no think-tank or vote. It seems that some people just decided to change the signs. They then started to use the signs in official settings.  These new signs then became a common part of sign language. The transition to the new signs happened quite naturally. They are now common place.

Who makes the decisions to change or add to a language? Does it just happen naturally? Or is there a sort of arbitrary group that approves the changes? Dr. C. George Boeree in an essay, Language Change and Evolution, notes several influences on language change. These influences can include influences of other languages, idiosyncrasies of individuals, fashion and of course the media. No language is immune, all are open to influence and change. There is no vote of agreement or anything like that. Language just changes and evolves right before our very eyes, and we don’t even know it!

So who owns Sign Languages like Auslan? Is it the Deaf community or is Sign Language owned by all the people that use it? In today’s day and age, teaching Sign Language is a market. People actually pay to learn it. Do these people that learn it have a stake in Auslan? Do the hearing parents of deaf kids that learn Sign Language have some ownership of the language? Do the Governments that use our tax payer money to fund courses or pay for interpreters in our education and employment have some stake in Sign Language?

I wonder if hearing people who have kids who are deaf, and who learn Sign Language make up home signs. I wonder if these home signs then have an influence over the development of Sign Language too. Who is to say that some home sign that a hearing parent made up will not get adopted quite naturally by the Deaf community when their deaf kids become active Deaf community members?

For many years now Deaf Australia have been very territorial about Auslan. Hell, if Deafness Forum so much as mention the word Auslan Deaf Australia are liable to get their knickers in a twist and write a letter of complaint to the Government. They almost seem to be the self- appointed guardians of Auslan. But what happens if Deaf Australia cease to be? This is possible with the way current Government funding is going. Will the Australian Sign Language Interpreters Association then become the ’guardians’? Do we need a guardian at all?

I have no answers to these questions. What I do know is that no one owns Sign Languages or any languages for that matter. Sure, Sign Language is the language of the Deaf community but they do not own it. Like all languages Sign Language is owned by the people that use it. It is influenced by the people that use it. The owners of Sign Language are many, and they are not all Deaf, or necessarily part of the Deaf community.

The strength of any language is probably shown by its robustness and adaptability to move with the times. It’s a case of adapt or die and so long as Auslan and any Sign Language can do that it will probably survive. When the Normans invaded England all those hundreds of years ago Dr George Boeree reckons they left behind a “..highly Frenchified English” So it is with Sign Languages, they have become “Highly Englishified”, depending on what the elite spoken language might be.

So who owns Auslan????  Probably not the Deaf community, that much is true. But as Twain says, they probably own the bulk of the shares.  You be the judge.

 

Paying Us Lip Service

Picture shows wheel chair ramp located to the left of steps making it impossible to get through the door.
Picture shows wheel chair ramp located to the left of steps making it impossible to get through the door.

Last week I was the victim of train delays as were thousands of Victorians. Inclement weather had seen a signal box get struck by lightning causing chaos on the line going through Ringwood. It could not be helped. I sat patiently at the station and played my iPad golf game while I waited. Suddenly the screen above me flashed an announcement. Tragically it told me that I needed to listen for announcements, every deaf person’s nightmare. The irony that they were able to send me a message by text to tell me to listen but not a message by text to tell me of the delays was not lost on me. It cannot be that hard!

Of course it’s not just deaf people that have to put up with a lack of access. It is virtually all people with a disability. In Australia they have a mentality of doing the absolute minimum for people with a disability. It just seems to me that our decision makers pay absolute lip-service to people who have a disability. They look at the legislation see what is the absolute minimum that they can provide and that’s what they provide.

I worked in local Government and I can tell you that this is exactly how they operated. My job in the local Council was to try and create access for people with a disability. Inclusion was the game. One of the first things that I tried to do was get the Council to consider installing a Changing Places Toilet, a toilet that has a hoist and an adult change table within it.

The general public is not really aware that for many people, even accessible toilets are not accessible. There are a number of people with a disability that require facilities that will allow them to be changed and for them a hoist and and/or an adult change table are absolutely needed. For many a day out requires careful planning. Blankets and towels need to be packed and often if toilet facilities are used the person with a disability is changed on the floor of the toilet. An entirely unhygienic and undignified experience. To get an idea watch this video.

I first suggested this idea to the Capital Works team. I suggested that by having such facilities we would be demonstrating best practice and that by installing such facilities the Council would be protecting itself from potential DDA complaints. I got a reply from Capital Works that basically said the installation of such toilets was not necessary and that to protect the Council from DDA complaints all that was required was to install a basic access toilet. They guy then outlined the specifications to me that were the absolute minimum the Council had to do. I am not kidding. Later, thankfully, a more empathetic person contacted me and we began discussions as to how such a toilet could be installed. Her empathy did not lead to anything though.

Yet even though I had a bit of support from a person within Capital Works I got very little from my own boss. I quickly worked out that mentioning the DDA at Council level achieved nothing. All that it did was encourage the Council to do the absolute minimum. I tried a different strategy. I pointed out that the Council was in a high tourist area. I pointed out that by having such toilets in strategic areas we were encouraging people with a disability to visit the area. I provided statistics about the economic benefit of encouraging people with disabilities to visit with family and friends. The argument was simple. Invest and thou shall reap.

The response of my boss was hardly enthusiastic. Her first response was. “Gary your job is to focus on people with a disability in our region not to worry about those that might be visiting.” I must have given her a god awful dirty look when she said that because she physically recoiled from me. Suffice to say, I was gobsmacked.

But I am perseverant. I continued to campaign and lobby for the introduction of such a facility. Realising my determination my boss tried to reason that we needed to go slow. She said change was incremental. A Changing Places Toilet, said she, was something to aim for long term. I pointed out that people with a disability in Australia had been waiting a long time for very little gain and that it was a bit insulting to them to say their needs were of an incremental basis when such large scale change was needed. I pointed out that attitudes that promoted incremental change were the very reason Australia ranked near the bottom in terms of opportunities for people with a disability among OECD countries.

Realising that reasoning was not going to nullify my determination she began a strategy of suppression. I tried to post a Changing Places information video on the Council website as part of an online community consultation. As part of the consultation I asked a simple question as to whether this is something that people with a disability would like to see in the region. My boss asked me to remove it. She said this was raising expectations.

Not to be beaten I tried another tactic. I reworded the question. I said something like – “Changing places toilets are being installed all over Britain and in some places in Australia. Do you know of any similar initiatives that would be of benefit to people with a disability in the region?My boss did not have rebuttal to this. So what she did was simply refuse to approve the launch of the online consultation. It took over 12 months for me to finally get this simple video and question released.

But that was not all. I later conducted a Facebook survey on accessible toilets. I had argued that we needed to consider ramifications of the use of accessible toilets as communal toilets. I argued that there were many people that needed accessible toilets and did not have the capacity to wait to use an accessible toilet. The Council had a sort of informal policy that promoted accessible toilets as a communal facility. For example accessible toilets doubled up as baby change rooms.

My boss implied that my suggestion that using accessible toilets as communal toilets could cause hardship for some people with a disability was being over dramatic. So I conducted a survey through Facebook disability networks. The survey received 183 responses.

Some people thought it was ok to use accessible toilets as communal toilets so long as the use was quick. Others pointed out that their disability required strict hygiene and people leaving dirty nappies in the toilets put their health at risk. Others pointed out that the toilets were required by people with guide dogs and for people with intellectual disabilities who had difficulties with bowel control. The demand for the use of accessible toilets was, in fact, higher than even I had known.

I was very proud of the survey. It provided a very comprehensive overview of the use and views of who should be able to use accessible toilets. I presented it to the Councils Disability Advisory committee who raised further issues. I wanted to make the survey public. My boss supressed it and told the Advisory Council that they were not to discuss or release the survey outside of the Council walls.

To understand just how many of our decision makers treat disability access you have to work within Government, particularly local Government. Disability access for many Council’s is not about inclusion, dignity or human rights it’s simply an economic burden that must be kept to a minimum.

In short disability access in Australia is often given lip-service. Patronising smiles accompanied with superficial nods of agreement. You gotta be tough to stay in the disability advocacy game.

It’s like Einstein once said – “ The road to perdition has ever been accompanied by lip service to an ideal.” This is, sadly, too often the case in regard to disability access!

Brave New World – Part 2

bobIf you were Deaf or hard of hearing the late 80’s and early 90’s were a heady time. This was a time of great social change. In the late 80’s and early 90’s the Australian Association of the Deaf (AAD) was formed and then funded by the Australian Government. It was the end result of years of lobbying and its formation and funding was rightly celebrated with great gusto by the Deaf community. The Deaf community have a lot to be thankful for from those early pioneers who fought so hard to establish AAD. It is now known, of course, as Deaf Australia.

Deafness Forum Australia were also formed in the late 90’s. My memory is very vague about the formations of Deafness Forum. Suffice to say that the hearing impaired component of Australia’s hearing loss community protested that they were not recognised or funded in the same way as AAD. From this I believe the Australian Government decided to fund what is now known as Deafness Forum.

It was around 1993 that Deafness Forum Australia came into being. At one stage I believe that AAD were on the verge of being unfunded so that the Deaf community could be represented under Deafness Forum umbrella. AAD protested against this vehemently. They rightly argued that the way Deafness Forum was structured meant that the needs of the Deaf community were always in danger of being undermined and out-voted by the larger groups that made up Deafness Forum.

The groups that made up Deafness Forum were largely based on a medical and hearing viewpoint. These groups were the majority and the danger was that AAD and the needs of the culturally Deaf would be swallowed up by the issues of this larger group. The Government of the day obviously empathised with the views of AAD and decided to continue to fund both groups.

For a time AAD and Deafness Forum tried to find a way forward to work together. AAD were adamant that the voting structure of Deafness Forum needed to be restructured to ensure that the needs of the larger hearing impaired groups and ear health groups did not unfairly dominate. I don’t know for how long the two organisations tried to find a way forward but a resolution was never found. Indeed these early attempts to find a way forward led to a frosty relationship between AAD and Deafness Forum.  This frosty relationship still exists to this very day.

Nevertheless, despite these two deafness peaks not being able to get along, it is no coincidence that their formation led to great change and improvement in the life of people who are Deaf and hard of hearing. Some of the changes that occurred around and after the formation of AAD and Deafness Forum included:

  • Telstra agreeing to provide TTYs as part of phone rental. This came about after Geoff Scott launched a DDA complaint against Telstra that ultimately ended up in court. I know that AAD Supported Scott heavily in his case. I am not sure of Deafness Forum input but I am sure they were also working diligently in the background.
  • The National Relay Service came into being after a wonderful campaign that involved just about every deafness organisation in Australia. Who can ever forget its launch in 1995. It went down like a wet blanket with technical issues. Not to worry, it was up and running the next day. Ordering home delivered Pizzas now became a reality for people who were Deaf or hard of hearing.
  • Captioning improved out of sight. One must never forget that subtitled television was limited largely to Home and Away, Neighbours and a few select ABC shows. Indeed I remember that 60 Minutes began captioning their show and then stopped because people who were Deaf and hard of hearing complained that not all the stories were captioned. Consequently, 60 minutes decided that people who were Deaf and hard of hearing were ungrateful cretins and stopped captioning the show altogether.
  • Universities and TAFE began to accept responsibility to provide support for students who were Deaf and hard of hearing. I can tell you that in Adelaide in the late 80s and 90s there was virtually no support beyond buddy systems. For myself it was not until 1993 that I got interpreters for my social work studies. The provision of such support was the result of the introduction of the DDA and some concerted lobbying by our Peaks, particularly at state level. ( I was involved in the South Australian Association of the Deaf at the time as a rather inexperienced and ineffective secretary.)
  • AAD were instrumental in getting phone companies to allow SMS to occur across companies. When SMS started you could only SMS to a friend that had a mobile phone from the same company, for example Telstra to Telstra. AAD’s efforts were instrumental in allowing SMS to occur between different phone companies.
  • Communication support for people who are deaf and hard of hearing steadily improved. The Howard Government introduced Auslan for Employment, the National Auslan Booking Service for private Doctor Appointments and made incredible improvements to the workplace modifications scheme. All of the came about because our peaks consistently kept the issues under the nose of the Government. Live remote captioning also was recognised and funded under the JobAccess program.

These are just some of the fantastic changes that occurred after AAD and Deafness Forum came into existence. It is not a coincidence that most of this change all came about in the first 15 years or so that these two organisations existed. They both had direct access to the Government and were able to create awareness and ensure the Government seriously considered these important issues. Sure, advances in technology helped, but it needed skilful lobbying to ensure that people who are Deaf and hard of hearing could take advantage of these technological advances.

And so here we are in 2014. Come December our two Peaks will be defunded. Kyle Miers, Chief Executive of Deaf Australia has confirmed that the current model for funding peaks will cease in December. Miers stated in Deaf Australia’s August Members update, You may be aware that the government has changed the way that peak organisations are funded. Our current funding will cease at the end of December 2014 after so many years of the peak-funded program.”

Miers goes on to explain, “Deaf Australia has put in several funding applications seeking for funding for program initiatives and projects. These funding programs look favourably on organisations being part of a consortium as well as national peak organisations. We will know the outcomes of these submissions later this year.”

Deafness Forum are in the exact same boat. The uncertainty around the future of the two deafness peaks is very concerning.  There is no guarantee that Deaf Australia or Deafness Forum will be successful with any of the applications that they have put in for funding. Likewise there is no guarantee that the Consortium that they are aligned with will be successful in obtaining consortium funding.

The key word that I am hearing at the moment is the Consortium. My understanding is that the Australian Government has streamlined the number of Advocacy Peaks that it is funding.  There are seven or eight key peaks that have been guaranteed their funding. Among these are organisations such as the National Disability Services and the Australian Federation of Disability organisations.

Peaks such as Deaf Australia and Deafness Forum will not receive funding as they have done previously. It seems that the Government has some funding available and is looking favourably on organisations that form a Consortium.  What this is exactly I do not know. It seems that the Consortium is a consortia of organisations that pool resources to form a large advocacy organisation.

Where it gets confusing is that there is apparently more than one consortia. The different consortia’s are competing for what is a very limited pool of funds. The successful applicants of this so called consortia funding will be announced in December.

A source tells me that Deafness Forum have already aligned itself with one consortia. Deaf Australia are not part of that consortia. It would seem from Mr Miers announcement that Deaf Australia are clearly positioning themselves to be part of a consortia. Which one? We do not know.

My source tells me that some organisations are likely to receive funding outside of the consortia funding. These are likely to be organisations that support women with a disability, children with a disability and Aboriginal and Torres Strait Islander people with a disability. The so called consortiums are scrapping for the money that is left over.

The future for Deaf Australia and Deafness Forum as we know it is about to change dramatically. If they are part of a consortia they are going to have to be very skilled and diplomatic to ensure that the needs of people who are Deaf and hard of hearing remain prominent. They are also going to have to support the bigger message of the consortia that they are part of.  This message might not always fit into their ideological framework. It would seem that as part of their role in a consortia they will lose a lot of their autonomy. It will be interesting to see how it pans out.

One thing is for sure the challenges being confronted by both Deaf Australia and Deafness Forum are great. To survive they will need to diversify and compromise. Here is hoping that the voice of people who are Deaf and hard of hearing does not get lost in this Brave New world.

Unfortunately for Deaf Australia and Deafness Forum it is a case of adapt or perish. In the immortal words of Bob Dylan:

Your old road is
Rapidly agin’.
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’

I wish them both all the success in the world as they navigate this Brave New World.

## Please note the views expressed within are the interpretation of events by the author. They are by no means necessarily correct. The Rebuttal welcomes clarification of information and events in the interest of better informing people within the deafness and disability sector.

Brave New World

untitledIn 2013 the National Disability Insurance Scheme (NDIS) commenced at a number of selected sites around the country. Quite rightly people with a disability and their families celebrated with gusto. The introduction of the NDIS was the end result of a strong campaign to introduce self-directed funding for people with a disability. If the NDIS ever achieves what it was established to do, no longer will service providers be able to dictate the types of support that people with a disability receive. Instead they will have to design their services and supports based on what people with a disability demand. Simple economics – supply what is demanded or go out of business.

Not surprisingly, traditional service providers are very concerned about the market based approach. Until the NDIS was introduced, service providers had a monopoly on the types of support that was provided. Not only that, they really had all the power. They and they alone decided who was eligible and who was a priority. It was essentially the judgement of the service providers as to what was provided and who should receive it. People with a disability had very little power at all. In the next few years, as the NDIS rolls out across the country, the power and control will slowly move to the hands of people with a disability.

Currently the major service providers in each state are jockeying hard to try and monopolise the disability services market. This is why we are seeing the National Disability Services (NDS) lobby so hard for its member organisations to retain the status quo. In doing so the NDS, in my view, are trying to undermine the NDIS.

Indeed the NDS have shamefully encouraged Queensland not to join up. They have encouraged Queensland to wait and see, supposedly so that they can learn from the early mistakes of the NDIS. They are fooling no one. They simply do not want the change to occur because under the NDIS most service providers will lose their block funding and will have to completely change their approach to service delivery to meet a market based approach. If they cannot compete they will fall over. It is as simple as that.

What does the NDIS mean in terms of our traditional deafness service providers? Traditionally Deafness service providers have received block funding. Block funding is a term that refers to service providers receiving X amount of dollars per year to service X amount of clients. An organisation like Deaf Children Australia might receive $500 000 to support 50 clients per year. This is not a real figure; it is only an example.

Potentially under the NDIS deafness service providers will lose their block funding. Instead they will have to develop services for clients to ‘buy’ from funding that the client has been allocated by the NDIS. Now if the client decides that the traditional deafness service providers are not providing the service that they want, they will take their money elsewhere. For the deafness service provider this is very worrying because potentially they stand to lose everything.

A bigger worry for the traditional deafness service provider is that as deaf people begin to get services under the NDIS the deaf client, and this includes parents of deaf kids, will chose to take their funding elsewhere. Consider Sarah. She is a deaf kid. Her mum and dad see the NDIS planner. Sarah might have a cochlear implant. A priority for her parents is to use any funding received under the NDIS to purchase technology to enhance her listening. It might be that they chose to utilise captioning so that Sarah can participate better in the local yoga classes. They might want to install a flashing smoke alarm. They might want extra speech therapy to improve her speech. None of these are really traditional services of the traditional deafness service providers.

Whether the Deaf community like it or not most kids who are diagnosed as deaf will receive a cochlear implant. The need for Auslan, peer support, youth camps and the like, important as they are, are really not foremost in thinking of their parents. This is because most parents are hearing and have chosen a path where they want their child to be a part of the larger hearing community. They naturally will direct their funding to areas they see as critical. These areas are not necessarily what our traditional deafness service organisation focus on.

It is perceivable that once the NDIS is up and running all block funding will cease. Some service providers may receive transitional funding for a time but once this runs out, what next? I, for example, and many like me have no need for the services of Vicdeaf apart from interpreting. There are a number of agencies that provide interpreting and perhaps provide better service than Vicdeaf. I, and others like me, will channel my funding to the service that I consider most efficient.

It is possible that Vicdeaf, and all Deaf societies, in the not too distant future, will receive income almost solely from interpreting. Auslan certificate courses may also make up part of their income stream but without the block funding will this be enough to sustain them? Will the NDIS see our Deaf Societies become increasingly specialist services that are providing services to meet the demand of the market? Without block funding, exactly what will our traditional deaf service providers be able to deliver? Will they have the means to support a community?

In South Australia they have a senior citizens group. Without block funding will Deaf Can Do have resources to continue to support the senior citizens group? In Victoria, if Vicdeaf lose their block funding, will they have community rooms for deaf community groups to meet at? Potentially organisations such as Vicdeaf and Deaf Children Australia will have to downsize and operate from smaller more cost effective premises depending on the chunk of the NDIS funding that people who are deaf direct their way.

There is a reason that Deaf Children Australia are frantically trying to get out of the old Bluestone Building at St Kilda Road. They simply cannot afford the upkeep. With the introduction of the NDIS and the likely loss of block funding the income stream of Deaf Children Australia, already challenged, is likely to be challenged even more.

Do not get me wrong, I am a big supporter of the NDIS. It is the best thing to happen for people with a disability in Australia. BUT there is no doubt that the NDIS is challenging the existence and viability of many disability organisation particularly those that received block funding in the past. Make no mistake, this includes our traditional deafness service providers.

Early evidence of the NDIS also tends to suggest that some NDIS planning personnel do not necessarily understand the needs of people who are deaf. For example a parent told me recently that she had requested mentoring and Auslan family support for her deaf child. These were written into the NDIS plan of her child but inexplicitly not funded. Luckily the mother is knowledgeable and is negotiating changes to her plan that may yet see the mentoring and Auslan support funded. But what of parents that lack her assertiveness and knowledge? Many are likely to simply accept what is on offer.

Does this show a lack of understanding of the psychosocial needs of the deaf child on the part of some NDIS planners? If these things are not going to be funded by the NDIS, will the services of Deaf Children Australia in Victoria and Townsend House in South Australia, much needed as they are, become obsolete?

Already there are stories of service providers who are shamelessly directing clients to the services provided by their own organisations. This includes deafness service providers. In this way they are trying to monopolise the support that is provided. This goes against the grain of the self directed principles of the NDIS.

However, this monopoly is likely to be short lived as people with a disability grasp the concept of choice and begin to shop around prudently to get value for their dollar. For disability and deafness services organisations, the challenges of survival brought about by the NDIS cannot be underestimated.

It is a worry, for us and for them. But these are the challenges being confronted by our deafness services organisations right now. They must adapt or perish and so must we! Watch this space!

 

The next article will focus on the future of Deaf Australia and Deafness Forum Australia – How will they exist under the so called ‘Consortium’???