We Meet on the Last Saturday of Each Month Except December

L,

This Newsletter comes to you from the Hand Over Hand Club. The club is a selfdetermining group of people with both hearing and vision loss. It is an important part of the DeafBlind Association of NSW and is assisted by Vision Australia formerly Royal Blind Society of NSW. The club provides interesting outings, information and social interaction for its members. The newsletter is produced in Braille, Large Print, Regular size print, as a word doc, on CD and can be sent by e-mail.

Put yourself on the mailing list by ringing Janne Bidenko 02 9456 2372 / 0419 420 239 Voice OR send a fax to DBA FAX: 02 9744 0171 Fax anytime OR e-mail to .

Our website address is:

We meet on the last Saturday of each month except December.

We welcome all articles from members.

Articles, inquiries, comments and general correspondence may be sent to:

The Deafblind Association (NSW)

P.O. Box 1295

Strathfield NSW 2135

This month’s articles:

-DEAFBLIND AWARENESS WEEK 2013 - by Tony Hirst

-JANNE’S CORNER

-JULY BIRTHDAYS

-NATIONAL DISABILITY INSURANCE SCHEME UPDATE 44 - Jenny Macklin & Amanda Rishworth

-CELEBRATING THE LAUNCH OF DISABILITYCARE AUSTRALIA – Jenny Macklin & Amanda Rishworth

-SPEECHES FOR THE PRIME MINISTER AND JENNY MACKLIN by Trudy Ryall, Heather Lawson and Michelle Stevens of the Melbourne Deafblind Self Advocacy Group.

-DISABILITYCARE AUSTRALIA – Janne Bidenko

-PROUD HOMEOWNERS – 1ST FEBRUARY BY ROBERT AND NELL BENNETT

-QANTAS CARER CONCESSION – Trudy RyallDBAust

-TEN PIN BOWLING HAND OVER HAND OUTING JULY 2013 by Tony Hirst

DEAFBLIND AWARENESS WEEK 2013 - by Tony Hirst

Unfortunately some of our activities had to be cancelled because of Janne’s accident, such as a stall at Parramatta and selling raffle tickets and spreading information at Berowra and Pennant Hills, however as it happened the weather was definitely against any of these activities anyway.

The week started with a bit of a fizzle as it was one of the bleakest, most miserable days in 2013. Our small group met up at Maccas at Gladesville at about 10AM and had breakfast. The hot coffee and chocolate were the most welcome. During the 1½ hours we were there, we were often the only customers. However, we did talk to most people who came and our information on DeafBlindness was well received.

The band of stoic DB Awareness ambassadors were, Peter Minter, Felicity Douglas, Salma Abdo with Claire, Juanita Macleod, Leonie & Kwame Ahenkan.
Our numbers swelled at Maccas Woodcroft to include Gaie Barrett, Carolyne Hindmarsh and her friend Kathy and Carolyne'sneice.
Again our info was well received with one man taking a particular interest explaining that he had deaf sons. Again the numbers of people were as miserable as the weather.

DEAFBLIND AWARENESS WEEK LUNCH by Tony Hirst

Another wet & miserable day to be celebrating DeafBlind Awareness week. Although there was a lot of angst during the week about transport, there was lot more angst for some on the day itself. Still everyone did get there. Nobody slugged anybody and we all sat down and enjoyed agreat buffet lunch at the restaurant at Blacktown Workers' Sports Club pretty much as planned and all for the price of $13 per head.

Because of the weather, there was limited opportunity for spreading the good oil about DeafBlindness and people who are DeafBlind. There was no sports happening on the adjacent sporting fields and consequently no sports fans and followers we could attack with our brochures. We did a limited amount of awareness stuff in the club itself.

All in all a stirling effort by those who did brave the weather, especially Peter coming all the way from Newcastle and Juanita for meeting up to continue the journey with him from Strathfield by train & bus. As it turned out Beth and myself had a fairly light drive apart from the foul weather with minimal pickups. The staff at Jacaranda brought Nolan, Chris & Barb, so that was a great help.

I forgot to wish Irene a Happy Birthday so let me now wish her a very belated very Happy Birthday. Of course DeafBlind Awareness Week is also a remembrance for Helen Keller and our own Trish James Lee.

Those who were out there supporting DeafBlind Awareness Week were Irene McMinn, Tony Hirst, Felicity Douglas, Beth & John Valentine, Wayne Bushell, Joanne Palantino, Carolyne Hindmarsh, Dean Hanlon (just back from Norfolk Island with a big smile on his face), Brett McCreath, Ryan Rashid,Leanne Brimms, Leonie & Kwame Ahenkan, David Dawson, Michael Plowman (with lots of stories about his recent trip to China), Ian Parebo, Nolan Frazer, Chris Hammond, Barbara Fleming &staff from Jacaranda. We also welcomed some new volunteers AllyaSyahrudi, and the Sanchez family, Daniel, Gloria & Evelyn.

JANNE’S CORNER

Not much to tell you this month, I have been in a brace for a broken neck for a few weeks, I saw the specialist yesterday and unfortunately it will be another 6 weeks because it was quite a bad break. I have had the support of my son Peter from Dubai, and my daughters Louise from Rockhampton and Kris from Melbourne during the first month, which has been great. I have a District Nurse coming in twice a week to shower me, it is awful being helpless. However, I have still been able to address some issues by phone.

JULY BIRTHDAYS

A very happy birthday to all the July birthdayites, there are quite a few, I hope you all have a lovely day in whatever you are doing.

July 2Sandra Tillson

5Gail Bourne

7Stephen Hallinan

10Walter Pilloni

14Leonie James Ahenkin

18Joe Habib

21 Lisa- Maree Walker

24Peter Mulham

NATIONAL DISABILITY INSURANCE SCHEME UPDATE 44 - Jenny Macklin & Amanda Rishworth

Dear Friends

The launch of DisabilityCare Australia, the national disability insurance scheme, is just around the corner, and a lot of hard work is going into ensuring that everything is ready for 1 July.

Last week the Prime Minister and Victorian Premier announced Geelong as the location of the head office of DisabilityCare Australia. This is great news for Geelong and another step towards the full rollout of the scheme by 2019.

Once DisabilityCare Australia is fully rolled out, it will support around 460,000 people with significant and permanent disability. It is being rolled out gradually over the next few years because it’s a big change to the current system and we need to make sure everyone is properly supported to make the transition into the scheme.

The launch of DisabilityCare in selected sites across the country will allow us to evaluate the operation of the scheme throughout the implementation process, and learn ahead of full scheme roll out.

The most important things we learn will come from the experiences of people with disability participating in the scheme, as well as their families and carers, service providers and community organisations.

The National Institute of Labour Studies at Flinders University of South Australia has been selected to conduct an independent expert evaluation of the DisabilityCare Australia launch over the next three years.

The evaluation will help inform the future rollout of DisabilityCare Australia, and will provide us with invaluable insight into what works and what refinements might needed to the scheme.

The Australian Government is also establishing a separate division of the Administrative Appeals Tribunal (AAT) to conduct independent reviews of decisions made by DisabilityCare Australia. This will ensure that people who request an independent review will be seen by AAT members experienced in considering DisabilityCare decisions and working with people with disability.

We know that some people seeking an AAT review may want support while going through the review process. The Australian Government has also provided $860,000 in 2013-14 to support people through the AAT external review process.

We will also fund specific National Disability Advocacy Program providers in launch sites to provide support persons to assist applicants seeking an AAT review of DisabilityCare Australia decisions.

The evaluation and the independent review process will be important elements in the transition to the new scheme.

After all, we are not just making a few tweaks. We’re completely reforming the system.

And we want to build a scheme that stands the test of time.

CELEBRATING THE LAUNCH OF DISABILITYCARE AUSTRALIA

Jenny Macklin & Amanda Rishworth, 1st July 2013

Dear Friends,

DisabilityCare Australia, the national disability insurance scheme, is open for business!

People with disability, their families and carers in four launch sites across the country will start moving into DisabilityCare from today — in the Hunter area in New South

Wales, Geelong and the Barwon area in Victoria, in South Australia for children and in Tasmania for young people.

More than 26,000 people with disability, their families and carers will benefit from the first stage of DisabilityCare Australia, which will be gradually implemented over the next few years to make sure people can transition into the scheme smoothly.

By 2019 around 460,000 Australians with significant and permanent disability will be supported by DisabilityCare Australia.

They will have more choice over their supports and more say in how those supports are provided.

This major reform is all about putting people with disability first.

We are so proud to be celebrating the start of DisabilityCare alongside all of you who have made your voices heard so loudly and so successfully.

We would like to congratulate you – all the people with disability, all the families and carers, all the community groups, advocates and workers - who have worked so hard for so long for this day.

You have played a crucial role in shaping DisabilityCare Australia and it is starting today because of you.

We know you have made an enormous contribution and we thank you for your support and dedication to making DisabilityCare Australia a reality.

To find out more about DisabilityCare Australia, including the details of the launch sites that started today, go to

SPEECHES FOR THE PRIME MINISTER AND JENNY MACKLIN.– Trudy Ryall, Heather Lawson and Michelle Stevens – Melbourne Deafblind Self Advocacy Group.

Trudy:

Thank you for the opportunity to meet with the deafblind victorians tomeet with you all.

I am Trudy Ryall I had meningitis at 1 year old diagnosed with deafness at3. In my forties I was diagnosed with retinitispigmentosa - tunnel vision. I have a brother with the same genetic condition and it is called ushers.
We are the onlydeafblind self advocacy group in Australia ran by and for the Deafblind community. One of the major problems for the deafblind community is Communication Access and access to funding.
There are different types of deafblindness and deafblind people communicate in many different ways which is determined by the nature of their condition, the onset of Deafblindness whether it is present at birth or acquired later. This determines what resources are available to them.

Some are like Helen Keller (deafblind american) or some still have a little bit of vision and hearing.
For example, someone who grew up deaf and experienced vision loss later in life is likely to use sign language and English is their second language.

Others who grew up blind and later became deaf are more likely touse a tactile mode of their spoken/written language.
Methods of communication include:
Use of residual hearing (speaking clearly, hearing aids)

Use ofsight (signingwithin a restricted visual field or writing with large print).

Tactile signing, sign language, or a manual alphabet suchDeafblind Alphabet (known as "two-hand manual")with tactile or visual modifications.

Sign language Interpreting services or communicationaides.

Communication devices such asScreen Readers and refreshable Braille displays.

One of the major issues is Deafblind Victorians have problems accessing the appropriate communication for the deafblindcommunity to meet and learn about Self Advocacy. We are unable to have more Deafblind people join our group because there is a lack of funds to meet their special communication needs. We often have to cancel meetingsfor this reason.
The deafblind communitylives would be vastly improved if the UN convention of rights was used to haveaccess to communication funding and be free of exclusion from fundamental freedoms of life. The deafblind community want to find a way of accessing communicationlikegoing to a football game,getting a jobor obtaining an education.

It would be goodto create Australia wide disability self advocacy on anational level training and funding forgroupsto have on going training and communication access.
Thank you for your time now it will be heather and then Michelle speaking.
Heather:

Hi myname is Heather Lawson.

I am deafblind and have Ushers Syndrome, Like many others similar to me. I have been deaf since birth and as I grew older I gradually lost my sight because of Retinitis pigmentosa (RP) My vision started to deteriorate when I was young and got worse as I grew older. Now I have no sight.My brother and sister are also Deafblind which is caused from a genetic condition called Usher Syndrome.

I have used tactile signing for about 25 yearswhich means I touch people’s hands to understand what they are saying when they sign. This way of 'touching communication' in Auslan is part of Deafblind culture and the Deafblind world.Without tactile communication, I am isolated and frustrated for not receiving any information.

What are the barriers to the deafblind Community and the quality of life for our community?

In Australia many deafblind people are isolated, have different barriers due to vision and hearing loss such as restricted mobility, lack of communication opportunities , not enough support as well as mental health issues due to depression, grief and isolation. They need help. But where will Deafblind find the appropriate services? Many professionals, carers, and counselors in many disability organizations do not have any type of knowledge or skills working with deafblindness.

Three of us use deafblind services through Able Australia where most staff have the skills and knowledge working withdeafblind people. However there are a significant amount of deafblind demands for help or support which is badly needed from specialized Deafblind services which make it very difficult with limited funds. This is due to staff and shortage of funds.It is a huge problem if we choose to use other disability services and we are not given opportunity to choose who we use.

What about specific services for deafblind people in each state in Australia? Why DHS or Government says they cannot give funds to small organisations. It is true that deafblind need dedicated services not about small organisations. We cannot see or hear the world around us. Deafblind people are trapped at home because of a lack of dedicated support. It is not fairthat they could not afford to pay carers butthey need welfare support,independent living skills training.Other issue deafblind are unable to go to tafe to learn about technology. We cannot have a teacher to teach 10 deafblind students in a room.It is vital to have one to one support like aide support.

We want to enjoy life , go out but Not just a few hours support a week but when we need or want to we should have the right to go out when we like. We don’t want our home to be a gaol but it feels like it sometimes. The only way deafblind people can do that is to have fair access to both human and technical resources that allows us to enjoy a good life and to participate in the community when we want to – our rights, our choices, our dreams.our rights to tell government we want the same access as everyone else.

Will the government and NDIS help us?

Will NDIS and deafblind services work together?

Thank you now I want to ask Michelle to talk briefly.

Michelle’s Speech.

Thank you Heather. My name is Michelle Stevens, I was born Blind as a result of prematurity and lost my hearing completely due to cronic ear infections and complications. As a full time musician and piano tuner I depended upon my hearing my livelihood depended upon hearing. My road torehabilitation have been long, bumpy and hard. Fortunately I have learnt various skills in communication Tactile Auslan and mobility skills with my Guide Dog, and learning about technology.

When I first lost my hearing completely I thought there were no hope and I wanted to take my life and die. 20 years on, I finished University at La Trobe, with a Bachelor of Arts and Grad Diploma in Deaf Studies with a lot of help from the university, interpreters and my lecturers. Able Australia and the music therapy department have encouraged me to playing the piano again with help from my implant. Recently I passed Grade eight piano.

I do have concerns that in Australia there is not a recognised qualification for people working in the Deafblindness field. The Deafblind community in Victoria and some people from NSW, WA have gone into the class rooms from time to time to teach Interpreters who are doing their Interpreting qualifications. Students learn about Deafblindness, Deafblind culture, tactile signing. This is done by good luck rather than good management. The Deafblind community in Victoria have worked hard to teach the Interpreting Students to learn what it is like to be Deafblind. Sadly the only full time Auslan Course at Kangan Batman TAFE have significantly been curtailed when the Victorian Government cut the TAFE budgets. And there is no longer a full time Auslan course for prospective Interpreters and support workers for the Deafblind Community.