2013 was a big year for disability. It was the year that the NDIS was introduced. It offered so much hope for people with a disability. Before that time people with physical disabilities that needed support, just to get out of bed in the morning, might be lucky to get that support twice a week. They didn’t stay in bed all week, no, in the times that they did not have support, family members or friends helped them out.

The NDIS was also set up for those family members. These carers who the NDIS like to call “informal supports.” It was not uncommon, it still isn’t, that parents of people with a disability cared for their disabled child even when they were elderly. By this I mean a parent might be 80 years old and still be caring for their disabled ‘child’ who might now be over 60 years old. A lifelong commitment based on love.

For my cohort, Deaf and hard of hearing, the NDIS provides funding to support them with communication. The NDIS has meant that thousands of people who are Deaf or hard of hearing now have funding access for interpreters or captioning. They can attend parties with hearing people and fund interpreters for that. They can go to funerals and get access to the speeches. They can go to their bank and talk home loans with the lender using paid for communication support. I know of one deaf person who is assistant treasurer at her local Lions Club, interpreters paid for by the NDIS so that she can participate in meetings. The NDIS has opened many doors for people who are Deaf or hard of hearing.

In my own family my son is stepfather to a disabled child. The child requires technology and support workers. He needs therapy too. The NDIS helps provide this therapy and support. Later My son and his partner may need modifications to their home or even their car so that their son can be more independent and participate in the community. The NDIS is helping now and will in the future.

Perhaps later, because this support is provided, it will allow my son and his partner to both be able to work and the taxes they pay will contribute to the economy. Even now their son is providing employment for support workers, physiotherapists, speech therapist and so on. These support people will allow their son to become more independent and to be able to participate in our community. While they are providing this support these support people are getting income to pay their bills as well.

There is no question in my mind that the NDIS is a great program. It is helping countless people who previously had very limited support and were often severely restricted in what they could do. Is it perfect? No! But its bloody good and I am thankful that we have it in Australia.

It irks me that these good news stories get very little coverage. Instead the focus is on cost, fraud, cock ups and bureaucracy. Just today The Australian screams “Autism will cost Australia $8.5 billion”. Two days ago Premier Palaszczuk wanted to shirk her States responsibility to support disability. “It’s a national scheme, not a state scheme .. “, she bemoaned. Premier Andrews in Victoria is apparently in the same boat. Phil Coorey, in a long rambling piece in the Financial Review, bemoans the cost, the ever increasing cost. I am so depressed that I and many of my disabled colleagues are seen as such a burden on the country.

As all these people moan about the cost, there are very few stories about how the NDIS is changing lives. There are no stories about the thousands, upon thousands of people that owe their livelihoods to the NDIS. There are no stories about how the NDIS is contributing to the fabric of Australia, both economically and socially. Instead, all people talk about is the ‘burden’ the scheme is on the country. They pull their hair out and exclaim the scheme is growing too fast. Or, like Palaszczuk, they try to shirk their responsibilities and lay the bulk the responsibility on the Commonwealth. Something is not right here.

Minister Bill Shorten says the Scheme has lost its way. He at least talks about the positive outcomes and the value of the Scheme to the country. In an address to the National Press Club on 18th April he had this to say,

….. the NDIS has not only changed those lives but that every state, territory and community benefitted socially and economically from the scheme.

As NDIA reported last year, for every dollar invested in the NDIS, it’s delivering a $2.25 return to the economy. If only all government interventions or private businesses can boast this outcome.“

Think of that. An expenditure of $34 billion has generated $76.5 billion in economic activity for Australia.

I have some strong views as to why the NDIS has lost its way? I feel strongly that a large part of the reason that the NDIS has lost its way is because too many NDIS people responsible for planning and decision making have no background in disability and little understanding of the people that they support. Shorten seems to have acknowledged this in his six point plan where he highlights the need to, ” …to increase the NDIS workforce and SPECIALISATION.”

This cannot come soon enough. Hand on heart I can tell you that a delegate once declined interpreting for a deaf client because, as they suggested, “… they can carry post it notes with them and communicate by writing.” Yes, this is an extreme case but is an example of the end result of employing people with no experience or specialisation. This leads to crap plans, leads to appeals, legal fees and time wasted on providing support to deal with appeals. What was the last figure I saw that the NDIS paid in legal fees for appeals? $28 million I think. Not to mention the re-planning and the administrative costs. Worst, the unnecessary stress it causes people with a disability.

Without doubt, the workforce must change, it needs people that know what they are doing. Wouldn’t it be great if the NDIS has specialist units that focus on specific disabilities like autism or Deaf/hard of hearing. Staffed by people with lived experience and people that know and understand their cohort. In my mind this will ensure planning reflects needs and will prevent many of the costly appeals that occur.

Shorten has a six point plan with the focus being on improving processes efficiencies and cutting down on mismanagement and fraud. All well and good. But none of this will work if their is no focus on cleaning up how decisions are made and ensuring consistency in decision making.

There certainly needs to be a greater emphasis on recognising the input of informal supports. Honestly, the number of NDIS delegates who refuse supports because they say it is ‘parental responsibility’ or that it is, “… the role of informal supports.” is a scandal.

Yeah, like funding support so a child can attend after school care so their parents can work. After school care do not fund the extra support that for thangs that might be needed like personal care or behavioural management. All these things are a cost of disability and therefore covered by the NDIS. The number of times I saw this request for support denied for after school care because the NDIS claimed it was parents responsibility or the State Governments responsibility made my blood boil. Or denying a person vehicle modifications because they have a wife who can drive them. It happened, it really did!

And then, of course, NDIS delegates often try to fob of NDIS responsibilities to the States because they do not understand what cost of disability means. So many times delegates told me that peg feeding was a State medical responsibility. It isn’t! If a disabled child cannot eat orally because of their disability and needs peg feeding, that is a cost of disability. Or the person who has breathing difficulties because of their disability who needs a CPAP machine, that also is a cost of disability. The NDIS needs to understand ‘COST OF DISABILITY‘ and stop trying to fob these types of support needs off to the States.

Yes, the NDIS has lost its way. I am thankful that Shorten and the Labor Government are trying to help it find its way again. I am thankful, particularly, that Shorten has publicly acknowledged the massive economic and social impact that the NDIS has for Australia. We hear too little about this.

As for those journalist and commentators that want to only focus on financial outgoings, I suggest that they all educate themselves. I suggest that the media start to use responsible journalism and really highlight the positive outcomes and the positive impact of the scheme. And if they cant do that, just shut up!!

Here is hoping that Shorten and the Labor Government can get scheme back on track! The NDIS is very much needed!

SCROLL TO BOTTOM FOR AUSLAN TRANSLATION.

Happy Easter everyone. I know that some of The Rebuttal readers may not celebrate Easter. I am a confirmed agnostic. I have my mind open to all possibilities. That said my values are very Christian and I observe Easter. Even if I was a Christian, I would be welcoming all and sundry, faith or non faith, to celebrate with me. I would hope they would welcome me to observe religious times of significance with them too. It is this sort of respect and tolerance our world is sadly lacking.

I am actually quite excited to write this. Firstly, because I have set up my laptop so that I have three screens. What I am doing is writing this then translating it to Auslan when I finish. On one screen I have the blog which I am typing. On another I have camera set up so I can translate paragraph by paragraph. On a third I have Sign Bank to check signs that I don’t know because my Auslan is so lousy. Sadly, Sign Bank doesn’t have any signs for religions outside of the big three so I have had to resort to using “Different Religion” and Non Religion”.

But I digress, this Rebuttal is to celebrate. Because the Deaf community have had a win this week. It’s a win for both Deaf and hard of hearing people. It is a win that is long overdue. It has been nearly two decades in coming, but finally it is here. This may be a bit cheeky but I am going to claim some credit, along with my manager, for it happening. Just some.

In an Easter Miracle, the Federal Government has finally increased the Employment Assistant Fund for Auslan and captioning at work. For years it has stayed at $6 000 per year. For everyone, no matter what they worked as or where they lived. It was wonderful when introduced. But after nearly two decades that $6 000 has become horrendously inadequate. Two days ago we heard that it had been increased. In fact it has been doubled to $12 000. HOOOORAY!!!!

Now, why am I claiming some credit? Well, when I worked as a National Disability Coordination Officer, as I did over 14 years, I went to many a consultation about access to employment. Without fail I would always bring up the issue of EAF. In my current role as manager of a DES service I am in contact with the Government regularly and letting them know of the inadequacy of the old $6 000 Auslan for Employment. Myself and my manager have been quite vocal about it. I would like to think we played a small part in getting the increase.

I am sure there are others who have done the same. The old level was just ridiculous. I have said this before, but when I worked in the NDIS my interpreting bill, along with another deaf colleague, was $84 000. That was just for 9 months. I used both Auslan interpreters and live captioning. To be quite frank, the $6 000 was expounded in the first four weeks where it was spent on my induction training.

There are other professionals like me who have similarly high needs when it comes to communication access. I have always been lucky that my employer has been willing to foot the cost. Not so many other employers. Small business just cannot be expected to be able to wear the extraordinary high cost. They need assistance from the Government to be able to employ Deaf and hard of hearing people and meet that cost of communication access. The $6 000 just did not hack it.

Over in the UK, where my wife has just landed, they provide communication support at a much higher level. I am not sure how it works but I believe a Deaf or hard of hearing person can claim up to 53 000 pounds. (Sorry my keyboard doesn’t have the pound symbol) That’s $98 732 Australian. I think in the UK they work out the level dependent on your duties and employment level. Don’t quote me on that, but I would be interested to hear how they work it out over there.

If you compare the UK with Australia the new $12 000 looks pretty puny in comparison, doesn’t it? At this point in time, I don’t care. We need to celebrate our wins, because these wins are all to few and far apart.

So well done us on getting this increase. Well done all those people who, like me, took every opportunity to tell the Government that Auslan/captioning for employment needed to be improved. Getting it doubled is a tremendous achievement! Take a bow everyone!

That said, its still not enough. But that’s a fight that can start next week. Yay US!!!!!!!

Happy Easter everyone – And I mean everyone!!

Last weeks REBUTTAL certainly hit a few raw nerves, particularly among our interpreters and even ex interpreters. Several have posted on my social media or gotten in touch with me to express their frustrations. Some of them are CODAs who have been in similar situations such as Claudia described in the article. Others just shared their own stories of working with the health system. I could come to only one conclusion, access to the health system for people who are Deaf and hard of hearing in Australia is broken. If it was ever working.

In the past, the Deaf and hard of hearing communities have had a number of advocacy challenges and confronted them head on. Telecommunications, captioning, interpreter access; these are just a few. Our Deaf and hard of hearing communities have had great success in these areas. The next great challenge is improving access to the health system. It is long overdue and it will be a long hard battle. The examples I present here demonstrate why it is such a priority.

The following quotes were posted on my Linkedin account in response to last weeks Rebuttal. The quotes paint a vivid picture of what people who are Deaf or hard of hearing, their families and interpreters are confronting every day as they try to access Australia’s health system.

“It is a disgrace. Many times I’ve had to interpret for my Mum when she was very ill at ED. It’s a rock and a hard place as a child of deaf parents, you just have to step up when interpreters are N/A. Unfortunately in regional centres the situation is much worse. VRI has helped but usually it’s “broken” “we can’t find it” “no one is available anyway” or “can’t you just do it”

And this:

“As I write this comment, I am actually afraid to share – but it is partly this constant disregard for the Deaf that influenced my decision to stop interpreting as my main employment. I know if all interpreters made this decision, it would be so much worse – but after so many years of watching the abuse, and advocating as best I could, and experiencing vicarious trauma through it, I couldn’t take it anymore. I would come home so angry and would stay worked up for days. And of course, when I saw it happening with my family it was worse. And it was only third party for me; I wasn’t even the Deaf person experiencing it. I can only imagine what it must be like, so constantly encountering it.

There were other factors in my decision as well, but this was definitely one of them.“

The stories of these two interpreters are examples of what happens to people who are Deaf and hard of hearing everyday as they try to access Australia’s health system. What follows is a story shared with me by an interpreter. They have provided me with permission to share on the condition that they remain anonymous. Something has to change, and soon!

This story happened several years ago. I was booked to do a regular job with a client and had been working with them for months. One day, unfortunately, the client became very unwell and an ambulance had to be called. I agreed to go in the ambulance with them so that the paramedics could communicate with the client. On the journey in the ambulance I begged the paramedics to call forward for a health care interpreter. At the time I felt I did not have the skills to interpret medical scenarios and felt ethically challenged.

Of course, they didn’t do as I asked. On arrival I interpreted between the deaf client and the staff. I made it very clear, again, that they needed to book a health care interpreter. As I said, I felt ethically challenged and also felt I did not have the skills at the time to interpret to the level required.

Instead of booking an interpreter, the hospital contacted a relative of the deaf person. I presume that they had these contact details on file. I do not recall interpreting any questions around contacting any relatives.

After a time the person’s relative arrived. I, and the deaf client, had made it very clear that a qualified Auslan interpreter who had experience interpreting in the health system was essential. As the deaf client and myself were arguing the case for an interpreter, the relative stood between me and the deaf client so that the client could no longer see and communicate with me.

The deaf client was very unwell. Despite this they persisted, along with myself, to request a qualified health care interpreter. Their pleas were ignored.

The hospital simply refused to book an interpreter. I was made to leave and the client was forced to communicate with the medical professionals without support, apart from minimal assistance from the relative, who had no Auslan skills.

In the end the deaf client gave in. They later confessed to me that when discharged they were still unclear as to what was wrong with them or the purpose of the treatment that had been prescribed. At the time what happened to the client was completely contradictory to our States health policy, as it is now.

Honestly, I wish now that I had made a formal complaint to the hospital. I did not because I thought that it was up to the deaf person to do that. Looking back, they were in no position to make a complaint, they were very unwell. The client expressed to me later their extreme frustration and fear about not knowing what was happening. The anger and trauma that they experienced, particularly because they had no idea what was going on, remains with the client, and indeed myself, to this day!

This is Australia’s health system today. This is what many Deaf and hard of hearing people are experiencing. Something has got to give. As I said, it is the next big challenge for advocates of the Deaf and hard of hearing communities. Can they meet the challenge?