Righting a Wrong

imageI have just had the enormous privilege of attending the DisabilityCare Conference. The Conference was a fine mix of information, celebration and drum beating about all things disability. I was privileged to be able to mingle with Australia’s elite disability activist. Among them were the Bolshy Divas – they are a group of elite disability activist, all females. I was very proud recently to have been anointed a Diva. They call me the Diva WAD. Because I do not want to offend anyone’s sensibilities I shall leave the WAD part for the reader to work out.

The Conference provided fabulous information about the NDIS. Of course we all know the name for the NDIS is now DisabilityCare. It is a name that many of us loath, including me, so I will continue to use the term NDIS. The information pertained to the structure of the scheme, what it will provide and some of the challenges of the roll-out. It also had some useful information from overseas about how self directed disability funding is utilised.

Of course with the NDIS there are some sceptics. I think scepticism is healthy just so long as this scepticism is used constructively to raise relevant issues. For example a few Deafblind activists let it be known that they felt that the Deafblind community had not been given proper consideration under the scheme. Others are worried about support their organisations will get to move over to the market based approach for services that the NDIS will require, particularly in terms of cash flow to their organisation. Others are still sceptical about how much choice they will really get. I think these questions and concerns are valid and need to be discussed.

Many speakers urged the community to give the NDIS a fair go. The NDIS is being rolled out in a unique way. It has a number of launch sites throughout the country. A lot of preparation has gone into the launch which incidentally happens on Monday July 1st. As people begin to use the scheme they will identify a number of issues that need to be addressed. It will take time but it seems that there is flexibility to adjust and change.  Hopefully this will mean that when the scheme is fully rolled out in 2019 the model should function like clockwork. That is the theory anyway.

As one speaker pointed out we have to be prepared for the shock jocks. Some will be creating scandals about how much money the scheme is chewing up while others will be creating scandals about how the scheme is failing people. I guess you have to ride the waves. We all need to be as flexible as we can but at the same time as diligent as we can. In the long run this will help the scheme become as strong as possible.

This brings me to a conversation I had during the conference with the EO of Deaf Australia, Karen Lloyd. Readers will know that I have a rather frosty relationship with Deaf Australia. Karen and I sat together at the conference dinner. It is fair to say that “we had it out”.

We discussed a number of issues including the NDIS, CaptiView and my apparently lax interpretation of information. Of course we did not agree on much but we at least had the civility to hear each other out. But one thing that we did agree on was that in relation to the NDIS I got one thing wrong. I think it is imperative that I own up to this now. ( footnote:  I am reliably informed by an interpreter who came over to offer interpreting that Karen and I were so animated in our “discussions” that she gave our table a wide berth 😀  – Apologies to all that were on our table.)

Recently I wrote an article. This article was about the NDIS. It was titled simply, NDIS – Now for the Hard Work. Now in this article I questioned the number of people the Government indicated that the NDIS will support. At the time the official Government line was that the NDIS would support 410 000 people. Since that time it has been bumped up to 460 000 people.

I suspect it will continue to be bumped up in the coming months and years. I made a claim in the article that, based on this figure, I thought that people who are Deaf and hard of hearing were not being considered. Looking back it reads as if this is a fact, in truth it is just my opinion. That said my opinion was based on the analysis of the data. I encourage people to read the article again to review my arguments.

Now it is here that I have to say that I GOT IT WRONG. Karen was at pains to point this out and she is correct. Karen directed me to some recent NDIS document releases. In one of these releases they have outlined prices for the various services, equipment and support that the NDIS will cover.[1] Within this DOCUMENT, on pages 11 and pages 14, you will see that it clearly outlines prices for hearing aids and Auslan interpreters.

Now the nae sayers have pointed out that the prices are based on the Office of Hearing recommendations which are thought to restrict choice. Others have pointed out that captioning is not mentioned. Some have pointed out that equipment like computer technology that enhances communication is also not clearly defined. Perhaps people with Cochlear Implants will argue that their implant processors are also not mentioned. All of these are valid questions and need to be asked.

This is where I GOT IT WRONG. Clearly people who are Deaf and hard of hearing have been considered. I am really happy that I got it wrong too. It’s great to see the evidence that people who are Deaf and hard of hearing are indeed being considered as part of the NDIS.

What is important now is that people who are Deaf and hard of hearing begin to use the scheme and see how it can support them. Around Australia there are a number of launch sites for the NDIS. Speaking with Karen we agreed that it was important that people who are Deaf and hard of hearing living within the launch sites seek support from the scheme as early as possible.

In this way the Deaf and hard of hearing community can begin to test the scheme. As the scheme is tested examples of how the scheme can be used to benefit people who are Deaf and hard of hearing can be developed. This might be simply purchasing hearing aids. It might be making claims for Auslan interpreting. It might be having a cochlear implant processor replaced.

In the DOCUMENT it states that Auslan interpreting can be used for communication support in essential personal, social or community activities. One might like to try testing how far this can go. Can it be used to get an interpreter for a funeral, a wedding or perhaps a 21st birthday party? Likewise one needs to test the system to see if it will replace hearing aids or if it will provide captioning. There are a whole range of different scenarios that need to be tested.

It is possible that none of these scenarios will be considered. But we will not know until we try. We must remember to be patient. Some of these claims might be rejected and some might be accepted. Now is the time for people who are deaf and hard of hearing living in the areas that the NDIS is launching to get out and see exactly what the NDIS can provide for them.

It will also not be as simple as calling up and saying I need an interpreter for a wedding. An assessment will occur and the assessment will cover a whole range of different scenarios. Based on the assessment funding will be allocated to be controlled by the person with a disability. How this will work with people who are Deaf and hard of hearing is not clear. We will not know until people who are deaf and hard of hearing begin to use the scheme.

Current agreed launch sites are the Hunter area of NSW, Barwon area of Victoria, all of South Australia for children and all of Tasmania for young people.[2] It will be particularly interesting to see what support can be provided to parents of Deaf and hard of hearing children in Tasmania and South Australia. Auslan language support for children in remote areas, perhaps? Intensive speech therapy, perhaps? Mentoring for young Deaf or hard of hearing kids, perhaps? We will not know until we try.

I urge people to be patient and support the NDIS as much as they can as it is launched and as it evolves. The NDIS, while it will improve things immensely, is not an unlimited source of funding. It is not designed to fix everything either. Some people have mentioned that the NDIS will fix things like announcements for people with a vision impairment at train stations, it will not.The scheme is for individuals with a disability and their families/carers. The powers that be will have to make decisions based on priorities and the NDIS rules. It will not all be plain sailing.

I encourage people who are Deaf and hard of hearing who are living in any one of the launch sites for the NDIS to contact either Deaf Australia or Deafness Forum Australia for advice. Perhaps the gathering of information and case studies about how the NDIS is benefitting people who are Deaf and hard of hearing is something the two organisations can collaborate on.

Congratulations to all those that worked so hard to get the NDIS up and running. It is a massive achievement. Generations of people with a disability will thank you.

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