The National Disability Insurance scheme is a hard topic to discuss. It is very dry and as such it is difficult to discuss it in a way that inspires people. While The Rebuttal may have succeeded in making a dry topic like the NDIS mildly interesting in our article, Two for  a Dollar, we feel we must continue to discuss it. It is probably the single most important piece of policy impacting on people who are Deaf and disabled since the introduction of the Disability Discrimination Act in 1992.

To understand the impact the NDIS can have one must hear real life stories.  Gary Kerridge brings us here a story of  Jack. A man who was a quadriplegic and passed away in 1995. If anything this story highlights just how unfair our society is when it comes to providing for people with a disability. Over to Gary.

I met Jack in 1995. I was working at that time for Options Coordination, supporting people who had physical and neurological disabilities. Jack was a huge man. He must have weighed well in excess of 25 stone. He was a biker and became a quadriplegic after a motor-cycle accident in the Northern Territory. After his accident he ended up at the Hampstead Rehabilitation Hospital in Adelaide. The Territory, at that time, lacked the facilities to provide for his rehab needs. Jack had a typical biker beard with the mandatory tats, He swore like a trooper. But he had a sharp sense of humour. Whenever I had appointments with Jack they inadvertently went on for a long time. We spoke for hours. I enjoyed his company, and I think, at least I hope, that Jack enjoyed mine too.

My job was to organise Jack’s home care needs. He needed help to get out of bed, get into bed, to shower, have his house cleaned and his food prepared. Everyday stuff like shopping and the like needed to be incorporated into his support plan. Jack lived alone in a house that he purchased with the insurance money that he got from his accident. He really wanted to go back to the Territory. However, because his rehab was such a long process he decided to stay in Adelaide.

But by 1995 Jack had had enough. He wanted to go home. He asked me if I could assist him to return home. Now the reality is that to do this all of Jack’s care needs would need to be arranged in the Territory. Like anyone in the world Jack wanted to make decisions and do things that made him happy. His request to have his care transferred seemed to be and was reasonable.

This was in 1995, not really that long ago. I rang the appropriate people in the Territory to get the ball rolling. I explained Jack’s wishes and what was required. To cut a long story short I was told that if Jack wanted to return home he would have to live in a nursing home because the Territory were unable to finance his needs in the short term.  They said it might take up to 12 months to get anything organised.

I explained this to Jack. Quite rightly he told me to Eff off. No way was he going into a nursing home. He was furious but refused to let it drop. I told Jack that I would see if there was a possibility to have his funding transferred to the Northern Territory until they were able to source funding to meet his needs. I was told by my boss that this was not possible. It was my turn to be furious. I went into bat for Jack, I ranted and I raved. I asked if we could take this to the Minister, or put something in the media to highlight the issue. I was told no because apparently, according to my boss, my most important job was to protect the Minister in charge of our department.

I even went as far as ringing the Northern Territory Minister for disability to try and get his support. The Minister was quite rude and dismissive and insisted that Jack would have to go to a nursing home if he wanted to return home. We spoke for an hour through the Relay Service. The Minister then just abruptly hung up on me stating  that he found the NRS annoying and that he had better things to do with his time. I kept a transcript of the  of the conversation from the TTY printout and presented it to my boss. He confiscated the transcript stating that information in the transcript was potentially damaging to OUR Minister.

Meanwhile Jack just wanted to go home. While my boss and politicians covered their tracks, Jack was essentially forced to stay in South Australia against his wishes. He had no Rights, he was a victim of the system.

Jack became very depressed. While we were working to find a way for him to return to the Territory he unfortunately developed an infected pressure sore. It became so bad he was admitted to hospital. I visited him in hospital. He was unconscious at the time. My last memory of him was him laid out, unconscious on his bed, wearing nothing but a huge sheet over his belly. It was an undignified sight. Shortly after he died. His dignity totally ignored by everyone.

Jack paid me the most wonderful compliment a few weeks before he became ill. He said, “Gary – what is a top bloke like you  doing working for a bunch or arseholes like this.” To this day it is still the most wonderful thing anyone has said to me. When things get to0 hard I remember what Jack said and it inspires me.

For Jack’s sake I hope the NDIS is passed. Because for Jack the NDIS would have given him total control over his funding. He would not have been at the mercy of idiot bureaucrats who were more interested in protecting the Ministers back. With an NDIS Jack could have just gone, taken his money and purchased his care elsewhere. I will never forget Jack and lets hope that we can find a way to get the NDIS up and running so that people like Jack can enjoy freedom and choice like us all.

The National Disability Insurance Scheme, or the NDIS, is the new thing in the disability sector. It’s kind of like Medicare where people pay a proportion of their salary which is then used to fund support for people with a disability.  This funding is then given to people with a Disability and their carers to control – self directed funding.  If it works well consumers will have all the control. They will have the money to buy services they think they need. No longer can services dictate to us what we need. Our deaf services will have to meet the market that we demand. Competition for the dollars that we control may well see services offering special deals. BOOK TWO INTERPRETER JOBS – GET ONE ABSOLUTELY FREEEEEE! This may well be the way of the future.

The concept of “self directed” funding is exciting. Imagine you, the Deaf or hearing impaired person, receiving X amount of dollars per year – say $25 000. The Government gives you some guidelines as to what you can spend this money on. Perhaps you want an interpreter at your sister’s wedding.  You don’t need to worry that the Deaf Society in your state is crying poor and unable to fund such interpreting. You just book one and pay for it from your funding. Your hearing aids are on the brink. No matter – use your funding to buy some more. Your work has a meeting and you need live captioning. There is no need for you to get it all approved through Jobaccess. Just book it yourself and you are away.

Of course it will never be that easy. It will have criteria and guidelines that must be followed. No doubt they will set up a panel of assessors who visit you to verify that what you want to spend your money on is a valid reason. There will be paper work and Doctor’s certificates and so on.  In short the process will be painful and cumbersome. Perhaps I am too cynical but experience tells me that this will be the case.

And you can bet your bottom dollar that our service providers – our Deaf Societies and our Deaf Children Australia are in a right old quandary about it all. Potentially they will lose funding as this is directed to NDIS to be controlled by consumers. If all goes to plan, consumers will have the money and decide which service is worth their dollar. These services will have to sell themselves as the best thing since sliced bread to get us to buy what is on offer.

Everyone will be out for a slice of the pie. Hell, it is happening already. Currently there is a Productivity Commission review of the NDIS concept underway. Service providers and stakeholders are voicing their views and concerns on the NDIS. One of our major service providers recently presented their views to the Productivity Commission consultation. You can see their views at –

http://www.pc.gov.au/__data/assets/pdf_file/0004/107932/20110405-melbourne.pdf

This organisation was represented at the consultation by three people including one who played the role of a living Deaf example. Two senior management representatives presented their arguments for and against the NDIS. Go to page 75 of the document. You will see their views about the benefits of “self directed funding”, a model that is currently used in parts of the UK.

They use terms such as “Empowerment”, “Choice” and “Reduced Barriers” and then go on to flog some of the organisation’s services as options that consumers might purchase if the NDIS is established.  Examples included mentoring, Auslan tuition and respite care. The NDIS has not yet been passed in any shape and form and here we have one of our major deaf service providers already positioning themselves as a key provider for consumers to spend their “self-directed” dollars.

The Rebuttal has no issue with this. It is astute marketing. But how much of it is driven by the possible loss of funding for services that the NDIS may bring with it? Organisations may well find they receive less Government funding as dollars are directed to consumers to control. It is a real fear for them and one cannot blame the organisation for wanting to be at the forefront if the change happens.

On page 76 the organisation goes on to promote itself as a possible agency to carry out assessments that will be required under the NDIS. They allude that current assessment processes are carried out by medically based operators such as occupational therapists and physiotherapists who have very little understanding of the specific communication needs of the deaf. What the organisation is trying to do here is point out that these assessments need to be carried out by professionals that “know” and not just any old assessor. Who might they have in mind for this? Well, themselves of course. Even if this is not said, it is pretty obvious. The baby has not yet been born and already people are selling themselves as its saviour.  “Mentors – two for a dollar!!”

It’s not just this organisation. It is just about everyone. One major service provider can be found marketing the NDIS to death through their Facebook connections. They clearly are on the NDIS bandwagon. Does this service want the NDIS? You bet it does because if it gets passed they will have any number of services that they offer to be purchased from NDIS funds. Live captioning in employment is one. Captioning for community functions is another. Possibly students at TAFE will want video learning material captioned so they can access it, although copyright factors may be an issue. Possibly consumers will be able to “self direct” their dollars to this service to make this happen.  The service must be rubbing their hands with glee at the prospect.

The Rebuttal is not writing this to be cynical. Rather we write this only as an observation of what is being seen. These organisations have to survive somehow so it is quite right that they are positioning themselves and preparing for the change. But spare a thought for the poor consumers who are looking on and wondering what benefits the NDIS will bring them.

Most will have no concept of what self directed funding is. What they may well be confronted with on the introduction of the NDIS is a mass of service providers peddling their goods. They will be swamped by a mass of information and many will lack the skills to sort the wheat from the chaff. Already Aboriginal disability advocates are in fear because the NDIS does not consider their specific cultural needs. Already they have voiced concerns that culturally inappropriate organisations will try to enforce themselves on their communities in the pursuit of profit. Already they have voiced their worries that their members will lack the skills to properly navigate the NDIS because it has been designed without their cultural needs as a concern. We must all be diligent to ensure that the NDIS addresses social and cultural needs and is not just based solely on medical and care needs.

What of parents that know very little of disability? Their disabled child is very often their very first experience of disability. Who will support them to spend their “self directed” dollars wisely? Who is going to be NEUTRAL in their support without profit as their sole motive? It is scary indeed. Indeed many are going to be severely intimidated and confused by the NDIS. All we can do is hope that the Government seriously considers the issues from the consumer’s point of view and is not hurried into making a decision solely for the purpose of finding dollars to fund disability support. There is much work to be done!

EDITORIAL COMMENT

Australia’s disability support model is in the midst of change. For many years now disability support in Australia has been chronically underfunded. The National Disability Insurance Scheme is an attempt to address this blot on the Australian concept of a fair go.

Essentially the NDIS is a tax. It is a levy that will be imposed, presumably on wages. The tax will then be used to fund disability support. Central to the NDIS is the concept of Self Directed Funding. Put simply we, the consumers, will decide what services we want and purchase them.

It is not the first time The Rebuttal has written of self directed funding. In August of 2009 we wrote an article titled ‘CONTROL’ about self directed funding based on a talk provided by the late Dr Paul Collier. Dr Collier spoke of his experience of self directed funding in the UK.

Among other things Dr Collier described Australia’s disability support as being in the “dark ages”.  Bill Shorten, previous Parliamentary Secretary for Disability, also described Australia’s disability support as lacking. Mr Shorten publicly stated on numerous occasions that a rich country like Australia needed to do better.

Part of Shorten’s solution to the problem was to push the concept of the NDIS to the hilt. The Australian Government has now picked up the ball and is running with it. They are in the process of intense consultation aimed at establishing whether or not the NDIS is viable. The Productivity Commission has the responsibility of rolling out this consultation. The findings of the Commission are eagerly awaited in the disability sector.

While there are many positives about the NDIS, it should be viewed with some caution. One only needs to remember the insulation rebate scheme and the pathetic early version of the Auslan for Employment Scheme to understand just how wrong Governments can get get programs when they are rolled out hastily.

The biggest fear of the NDIS is that it will be based solely on the medical model of disability. The fear is that it will focus on heavily on CARE and REMEDIAL needs such as hearing aids and auditory needs.

The NDIS needs to also consider the social model of disability. Disability is not always something that needs to be fixed. The late Dr Paul Collier, a quadrapalegic, spoke about how he used his self directed funding to organise care so he could go on holidays and assimilate with the whole of society. He showed holiday snaps of his holiday in Canada that was made possible by directing his funding to pay for his care support.

Likewise Deaf people may want to use their funding to book an interpreter to attend a local function or party so that they can interact more freely. There is a social need as well as a medical one.

More importantly parents, who are experiencing deafness or disability for the first time, need un-biased information and support to enable them to direct their funding appropriately.

It’s exciting for sure but we,the consumers, need to be vocal and ensure that the NDIS is indeed self directed and not dictated to us by medically obsessed bureaucrats.

Deaf Can Do in South Australia sacked a Board member  recently.  The Board member just so happened to be Deaf. The Deaf community were up in arms about this. Nothing new really as the Deaf community in South Australia have been up in arms about Deaf Can Do for many years now. They have been feeling increasingly marginalised from their spiritual home at 262 South Terrace. For sometime now they have felt that they have signed over their legacy to Townsend House to the point where they have no control at all. So concerned have they become that they have established the Concerned Deaf Group.

But I digress. This article is about the sacked Board member. Rumours about the sacked Board member reached fever pitch, so much that the President of Deaf Can Do felt the need to clarify matters. He sent the South Australian Deaf community an open letter and apparently even translated the letter to an Auslan video. He even went as far as naming the sacked Board member. I am not sure that if naming the Board member was a wise thing to do but the man’s a lawyer, I am sure he knew what he was doing.

According to the President the Deaf Board member was sacked because he had an unresolvable conflict of interest. He was sacked because he had not been carrying out his legal responsibility to Deaf Can Do as a Board member. According to the President a Board member is responsible to be loyal to the organisation that they represent. The President states that it is OK to disagree with decisions of a Board but once a decision is made, the Board member must toe the line and bow to majority rule. If they cannot, says the President, then they must resign.

The problem is that it is not quite that black and white. You see a Board member is primarily responsible to the stakeholders of an organisation.  There is an widely accepted model of Governance used in the corporate world known as the Carver Model of Governance. Carver states clearly that, “The board is accountable to the shareholders for the company’s achieving what it should (such as ROE, long term investment value, etc.) and avoiding what is unacceptable (such as excessive risk, illegality, unethical conduct, etc.). The board must, then, connect with shareholders sufficiently to be able to speak on their behalf.” In terms of Deaf Can Do its primary shareholders are, arguably, the Deaf community. The actions of Deaf Can Do are carried out for Deaf people on their behalf. One could argue that the Government is a key shareholder too, as it funds services. But funds are given for DEAF people, and Deaf Can Do must use those funds for the benefit of Deaf people. What this means is that Deaf people are the PRIMARY group that Deaf Can Do are responsible to.

Now apparently the sacked Board member disagreed with direction taken by Deaf Can Do. He became involved in the Concerned Deaf Peoples Group. He apparently made it quite obvious that he did not agree with decisions being made by his fellow Board members of Deaf Can Do. This, according to the President, was a clear conflict of interest and deemed as not acting in the best interest of Deaf Can Do.

BUT is disclosing to Deaf people your opposition to a Board decision a conflict of interest? Is disclosing to the Deaf community how Board decisions came about a conflict of interest? It is debatable. The sacked Board member may have felt that the primary stakeholders, the Deaf Community, had a right to know. Certainly the sacked Board member CANNOT disclose the views of individual Board members, but arguably he is within his rights to inform the Deaf community of decisions that are being made. It all depends on whether the sacked Board member was malicious in his intent or not.  On the intent of the Deaf Board member I cannot comment but clearly it is not as simple as disagreeing with the Board and publicly letting people know that one disagrees, there are shades of grey.

The President also claimed hat the sacked Board member had a conflict of interest in being involved with the Conerned Deaf Group. This is possibly true but it is not the first time this has happened at Deaf Can Do. The old South Australian Association of the Deaf has had several of its Board members on the Board of Deaf Can Do while still a Board member of the South Australian Association of the Deaf. They were allowed, rightly or wrongly, to serve on both Boards. This is also a conflict of interest because technically the South Australian Association of the Deaf may have been required to protest of decisions made at that time by Deaf Can Do … Which Board would they have been answerable to? It seems hypocritical that this one Board member has been sacked for his involvement in the Concerned Deaf Group when such conflicts of interest have been allowed to exist in the past.

Nothing is ever quite as black and white as it seems. All we can say to the Deaf community in South Australia is continue to ask questions. When in doubt seek legal advice but never accept anything on face value. That means not even this article. I am no lawyer and I maybe wrong but some of the arguments put forward by the President are open for debate.

Deaf education is a FUNNY thing. I have a bit of experience in the field – fourteen years in South Australia, Victoria and Northern Territory. I have met some wonderful teachers of the deaf along the way. People I have worked with and aspire to be more like. Likewise I also have met some shockers – people who don’t care about the educational welfare of their students and are too comfortable to leave. Inspirational students have astounded me and restored my faith in deaf education. Some from more difficult backgrounds have concerned me. It is a mixed bag.

Recently I was talking to a mother of a deaf daughter who I have had the privilege of working with. We were discussing our children and where we would be sending them to secondary school, the pros and cons and so forth. Along the way our conversation touched on deaf facilities in Victoria. We shared similar thoughts. Do others also feel as we do?

The Victorian Government oral deaf facilities appear to be in more affluent suburbs. Mount View Primary School is in the very middle to upper middle class leafy suburb of Glen Waverley (my old school as a matter of fact). Taralye (non-Government funded kindergarten) is in the prestigious part of Blackburn. Brighton Primary School is right smack bang in the wealthy kids’ playground. They all promote an oral philosophy. Their location almost guarantees that the wider hearing student population attending that educational setting will have a more stable home life, less behavioural issues, less poverty, better nutrition and so on. There would most likely be more emphasis on education rather than discipline and restorative practices.

The Deaf Facilities at Government schools that promote an Auslan/ oral combined method are usually in the lower middle class to lower socio-economic regions such as Frankston, Ringwood, St Albans and Sunshine to name a few. When schools have to constantly deal with socio-economic issues, education can come a distant second in priorities. Yet these schools are where Auslan education is mostly based. There is often no choosing which facility and school is best for the family. It is a game of geographical luck and hoping that education trumps discipline and social issues at that school.

In regional Victoria, there are even less choices for parents of deaf children. It is interesting to note that most of the Deaf Facilities are located in the areas where there is a higher population of lower socio-economic families.  My friend and I discussed why this would be and we answered in unison – “Funding for the schools.” The schools in those areas often want more funding for the extra programs that they must run. They are often more willing to take those programs others would say are in the “too hard basket”. The schools in the more affluent areas usually would not need the extra funding or want to risk their respected reputations.

The Education Department in its finite wisdom established Deaf Facilities in the less respected areas. This can and has backfired, especially in regional areas. Even if a school is quite committed and has brilliant teachers, if there are too many students with behavioural or learning problems, this affects the morale and character of a school. Parents hear of this. They form ideas and judgements. I am guilty of this with my boys’ education but at least I can choose from several schools. How much more severe is it for a deaf child who has only one option and often quite a distance from home, particularly in regional areas.

Deaf student numbers are dwindling as parents opt for mainstreaming. If the deaf facility was in a better and more affluent area with a stronger academic background, would the situation be different? If the deaf facility had a more pure oral focus would more students come? You bet. I have had different parents tell me this to my face. Despite having teachers of the deaf, the latest technology, sound proofed rooms etc – all this is squat if the school has either Auslan incorporated into the learning program or a ‘reputation’ for students with behavioural or learning issues’.

The private schools and Catholic sector are another example. Not one of them, to my knowledge, promotes Auslan. One will use Signed English only. The others promote a singular oral/aural philosophy. Their numbers are steady and the envy of other Deaf Facilities. They often have brilliant and very thorough work programs for their deaf students. On the flip side of the coin some of their students could benefit from a bilingual model but cannot access this.

There are teachers and people who believe that an oral deaf student, especially with cochlear implants, can hear everything that is said. Sadly this is rarely the case and this impacts greatly on the deaf child’s wellbeing. What happens if you have a deaf child who uses Auslan? Which private school deaf/hearing unit would accept him? Where can that child go? Why do none of them, or other private schools, offer placements and support for Auslan and oral communication modes? It smacks of elitism and a lack of understanding of the linguistic and educational value of Auslan. Who misses out? Without a doubt it’s the deaf students who are perceived as using the ‘wrong’ communication mode.

The Victorian College of the Deaf is an interesting contrast. It is in an affluent area. It shares the same location as a well respected private school. It is open to deaf students only. The school promotes an Auslan/English bilingual program and has wonderful facilities. However parents today appear very much in favour of mainstreaming their children. Exclusive schools for the deaf seem less attractive. VCD, despite its location, is struggling to attract primary aged students. It is cruel but fair to say it receives a high proportion of deaf high school rejects. The students who don’t cope in mainstream education or have an extra disability often get pushed to VCD. I suspect that if VCD was mainstreamed with hearing students and offered an oral program instead for its deaf students, the numbers would increase significantly. This seems to be an indication of how the establishment looks down its nose at Auslan. Simply said, Auslan is valued less than oral speech and Deaf facilities, including VCD, receive many of the cast offs that the elite see as failures.

Many schools, teachers, parents and the community in general do not understand how deafness impacts on the child’s life. Too many think the impact of hearing loss can be rectified or reduced with amplification. Little consideration is given to the linguistic, social, emotional and mental impact of growing up deaf.  The geographical destination of the bulk of schools that provide Auslan suggests that Auslan is regarded as second class. If the Education Department was serious about Auslan they would provide choice and not just at schools that are crying out for funding. Yup! – Deaf education is a FUNNY thing!

Editorial Comment

Welcome Back to The Rebuttal!

We are back! Our readers would not let us go. We tried to just fade away but popular demand, kind words and an obvious need has meant we are keeping The Rebuttal running. Both the Ezine and the Blog.

Marnie Kerridge has agreed to be the chief editor of The Rebuttal. In tune with this new role she has presented our COMEBACK article.

Marnie’s article touches on a subject very much THE ELEPHANT IN THE ROOM. Everyone knows it, but no one will discuss it openly. Namely that education that utilises Auslan is a very poor second cousin to oral education.

Before Oral Education advocates roll their eyes and say “Here we go again” remember that Cora Barclay television advertisement. Where the little boy starts signing, saying that in years gone by this is how deaf people used to communicate. He then breaks out into speech and exclaims “BUT NOW THERE IS A BETTER WAY!”

Or the delightful Dr Bruce Sheppard from the Sheppard Centre in Sydney, that staunch advocator of all things oral who had this to say about Auslan in a radio interview with Phillip Adams in 2006, “… But especially we wanted our children to develop language. Because it’s not well known that the average profoundly deaf person who signs generally doesn’t develop terribly good language and they often can’t understand a great deal of what they read and they can’t make other people understand what they’re thinking.”

Of course Mr Sheppard neglects to state that deaf kids that don’t succeed orally or with their cochlear implants, and these are more common than people would like to admit, face exactly the same issues. Usually once they have FAILED they are introduced to signing after their language acquisition has been horribly impeded by this obsession with all things oral.

When oral education for deaf kids works, it’s terrific. When it does not, it’s tragic. This is equally true for Auslan, for without the right support for parents and deaf kids to properly acquire Auslan they are also doomed to failure.

The consequence of this failure, both oral and signing, is that the deaf kids are deeply disadvantaged. They struggle to learn, they struggle to communicate, they struggle to mature and in latter life can suffer any number of mental health issues related to isolation and low self-esteem. It is not pretty.

This is why Auslan and oral education must be on an equal footing. They must exist side by side. And please do not bring up that old furphy that signing impedes speech development. There is enough research around to show that oral and signing methods complement each other. Goodwyn et al, 1988, carried out longitudinal studies of deaf kids that were provided access to signing and oral education. The result? Kids with access to sign language and oral methods performed better in speech acquisition and language tests. It is time to give Auslan the prestige that it deserves. It is not just a tool; it is a vital part of the language and human development for deaf kids.

We can start by giving the iconic Victorian College of the Deaf recognition for the programs it provides. We can start if we stop using it as a dumping ground for students that have failed in the mainstream and oral methods. We can start by recognising its TRUE value and not just the value of the real estate that the college resides on.

Remember, The Rebuttal is here for you. If you have something to say or want an article published, please write into us. As long as your article or what you have to say does not personally attack individuals we will do all we can to publish what you write.

That’s why we are here – THE REBUTTAL IT’S FOR YOU!

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The Rebuttal takes no responsibility for the views expressed within. All articles are the express responsibility of the Authors alone!

Article: Marnie Kerridge

Editorial:  Gary Kerridge