We Meet on the Last Saturday of Each Month Except December

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 029456 2372 /0432 570 210 Voice OR send a fax to DBA FAX: 02 9744 0171 Fax anytime OR e-mail to [email protected].

Our website address is: http://www.dbansw.org.au 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:

- 30th MAY OUTING, TENPIN BOWLING – Mick Plowman, Dalcy Braw & Andy Pickup - JANNE’S CORNER - JUNE BIRTHDAYS - A VISIT TO THE MINISTER FOR DISABILITY – Irene McMinn - WORLD FEDERATION OF DEAFBLIND – Irene McMinn

th - 16 DEAFBLIND INTERNATIONAL CONFERENCE – ROMANIA 25- 30 May 2015 – Janne Bidenko

- NDIS INDEPENDENT ADVISORY COUNCIL PROGRESS UPDATE 1 - MINISTERS SIGN AGREEMENT FOR EARLY NDIS ROLLOUT

- MEDIA RELEASE – David Murray, ADBC

- DEAFBLIND AWARENESS WEEK GALA LUNCHEON - SATURDAY 27TH JUNE 2015 – EVERYONE WELCOME

30 th MAY OUTING, TENPIN BOWLING – Mick Plowman, Dalcy Braw & Andy Pickup

Dalcy - . I think everyone had a great time bowling, it was fun and rewarding experience. My lane did very well, with some people scoring a few strikes. Lots of smiles and high 5 s. Andy and Mick did a great job coordinating. Thanks guys! !! Looking forward to next outing.

Andy - A warm welcome to two new volunteers, Brendan and Jo who were a great help on the day.. hope to see them at more of our outings! Everybody seemed to have a good day and enjoyed the bowling, though I think Brett was a little disappointed in coming second to Leanne in the final score! Dalcy added her usual pizzaz to the day, sharing her enthusiasm and excitement with all, as she always does! It was good to have Lawrie turn up to see his old friends and support the group. The only disappointment was the long wait for lunch for many of our clients, and maybe we should look at pre- ordering when we use this venue again. Might save a lot of angst! All in all, a good day as enjoyed by all, and the staff at the bowling alley could not have been more helpful! Mick - Those attending were Patrick, Dean, Brett, Ian, Leanne, Joe Habib, Mark H, David from Annandale, Wayne, Annie, Gaie, Nerida, Libby and Cathy plus their For- sight staff, and Volunteers, Jo & husband Brendan from Campbelltown way, Dalcy, Andy, Kamal, Lawrie & Carolyne.

All members played, including the carers, plus, Jo & Brendan and Carolyne.

It was good to have enough volunteers so people could take a breather when they needed it, I know I had a big one. Thanked the Lady on the counter for our day and the staff in the cafe.

Lane 21 Lane 22 Lane 23 Lane 24

Brett 100 Ian 80 Anne 77 Nerida 96 Leanne 126 Joe 102 Gaie 84 Patrick 76 Jo 102 Mark 83 Deano 71 Libby 85

2 David 85 Brendan 98 Carolyne100 Cathy 82

Janne’s Corner

What an exciting and interesting month – I am still trying to get my feet back on the ground.

On 5th May Irene and I had a meeting with Ann Panhallurick from PWD, who has the job of employing a person to connect with Deafblind and Vision Impaired people for the NDIS. PWD received funding through an organisation in SA, JFA Purple Orange. We then went on to a DNF meeting in the City in the afternoon. The 13th May saw the DB Forum meeting which was very interesting, with good interaction between NSW and Victoria, much concentration was on communication and communication/guides for the implementation of the NDIS. We also organised committees to further the development of DB Forum. Establishment of 2 committees to assist in the development and growth of this, DB Forum meetings will take place every 3 months. 1. Communications training committee - Subcommittee members elected are: Carla Anderson, Steve Ripley, Andrew Wiltshire, Justine Lorenz, Beth and Carla will work together and will involve Meredith. Carla suggests a Senses staff member and will get the ball rolling and begin the process of working together. We’re doing a lot of talk but not much action so would like to see the working group really progress and get things moving.

2 Committee to develop Terms of Reference for the Sydney DB Forum, this committee is yet to be confirmed.

We also explored the joint Advocacy committee, which will also meet 3 monthly, but in between the DB Forum meetings, i.e. we will have 6 weekly meetings counting the two different groups.

On the 14th May we interviewed two people for the admin co-ordinator position at the DBA(NSW) office, however the third person was unable to attend and this has had to be delayed because of Irene’s and my trip to Romania for the World Federation of Deafblind, of which Irene is on the Board, and the DbI World Conference.

The 21st May saw us fly out to Bucharest, Romania, a 30 hour flight landing at Dubai, then London and eventually Bucharest. This was a wonderful trip, Irene will speak about WFDB and I shall give some information about the Conference further on. We returned on Monday 1st June, so we were in no fit state after the 30 hour trip back to attend the DNF meeting on Tuesday 2nd, but will get information from this later. 3 However the most exciting part of this past month was a meeting on Wednesday 3 rd June, with Belinda Epstein-Frisch from JFA Purple Orange, which I spoke of earlier, to talk about the needs of Deafblind people and the lack of current support. We then went on to meet with Ann Penhallurick PWD again, they had received applications for the ‘Communication Connector’ to work with Vision Impaired and Deafblind people to educate/advise on NDIS planning, 2 young women had been selected for interview. In the afternoon we interviewed them, both very good, but the person selected is Krystel Keller who will be working with you all over the next few months, she will start her training for this on 12th June. We are planning to have a Gala Luncheon at Parra- matta RSL, with as many Deafblind people and families as possible for DeafBlind Awareness Week, where Ann Penhallurick will begin giving information and arranging for meetings with Krystel.

ABOUT JFA PURPLE ORANGE - it is the social policy agency of the Julia Farr Asso- ciation Inc. SA. We are a non-government, social profit organisation that conducts re- search and engages in dialogue with people with lived experience of disability to develop policy and practice. Our work is anchored on the principles of Personhood and Citizenhood. We are not a service agency providing hands on support. Instead, we try and influence the way things happen in our communities so that people living with disability get a fair go at everything life has to offer. ABOUT DEAFBLIND AWARENESS WEEK

This year we are having one large celebration, instead of having a ‘family and staff day’ on the Sunday at the beginning, and the main event, a luncheon, on our usual HOH day, 27th June, which is also the anniversary of Helen Keller’s birth and is to be proclaimed Helen Keller Deafblind Day. It is a very exciting time at present and I really ask everyone to take a look at the Outing details at the end of Rainbow and please join us for a fun filled and very informative time.

I wish to invite all Deafblind members, people from Ushers group, Forsight and other Group Homes, together with family members and staff, to this wonderful opportunity at the Parramatta RSL Club on Saturday 27th June.

JUNE BIRTHDAYS

A very Happy Birthday to all, enjoy our lovely winter weather and the warmth of family and friends on the day. June 1 Michael Milazzo 5 Nolan Frazer 5 Gail Bourne 6 David Clulow 4 8 Lyn Johnson 11 Lawrie Kingshott 13 Osanne Pangilinan 20 Carleeta Manser 21 Hani Berbari 26 Irene McMinn

A VISIT TO THE MINISTER FOR DISABILITY – Irene McMinn

On Tuesday 9th June, Carleeta and I had an appointment with John Ajaka Minister for disability in the State Parliament as Self-Advocacy.

Mark was unable to come with us so just the 2 of us went. We both travelled in by train to the city and met up at Martin Place where the Minister has his office. We had to go through security at the front desk before catching the lift up to the 18 th floor and entering the Minister’s office.

John Ajaka welcomed us to his office and thanked us for coming to see him. We were able to raise quite a few issues with him and he was very interested in what we had to say - he had never seen a person using tactile sign before. He was also im- pressed with Carleeta’s support who voiced her questions even though Deaf herself, as it made him realise some of the difficulties.

Some of the issues we raised were Communication-Guides to take Deafblind people out in the community, the need for Braille training in schools so that Deafblind children do not grow up unable to read and write, The problem of getting interpreters and the cost of this and the need for training through TAFE. The need for Advocacy for DB people with the NDIS coming.

We both felt that the meeting was very productive and the Minister said he would work on some of the issues and thanked us for coming to see him and we thanked him for talking with us.

Irene McMinn

WORLD FEDERATION OF DEAFBLIND – Irene McMinn

Janne and I recently attended a board meeting of WFDB the meeting was held before the Deafblind International Conference. Four members of the committee were unable to attend so there were 6 board members with their interpreters present at the meet- 5 ing. We had 12 items on the agenda and we were able to get through all 12 items although the meeting did go over time.

On the Saturday we had the morning free as Ricu, the representative from Finland could not get there until 2pm. So Janne and I decided to go shopping at the brand new shopping centre. We caught a cab to the Centre which was huge. We wandered around looking at the shops and deciding what to buy to bring home to family members.

We finished up with a cup of coffee and caught a cab back to the Hotel.

The meeting started with a roll call and then accepting the agenda and then the dis- cussions started. Janne was interpreting for me on the Braillenote . Christer gave a report on the financial state of WFDB and it was agreed that a Fundraising committee was needed there was a lot of discussion about who would be appointed to this committee this has still not been decided and the discussion will continue by email. A So- cial Media committee was established and certain people were to be asked to join this committee.

On the Sunday some board members of Deafblind International joined us to discuss future cooperation between WFDB and DbI. We discussed the difference between the conferences DbI is set up for Professionals and WFDB Helen Keller Conference is set up for Deafblind people.

Christer asked about the Deafblind symbol red stripes on the white cane some countries have already adopted this symbol.

DBA NSW has become an associate member of WFDB, we told them all about DBA and what we stand for and they accepted us as associate members.

We all had a long discussion about the next Hellen Keller Conference and General Assembly which is to be held in Madrid Spain in June 2018. It was agreed to hold the General Assembly first then the social day followed by the Conference. Then we have been invited by the conference committee to join in the celebration of Helen Keller Day on 27th June.

16 th DEAFBLIND INTERNATIONAL CONFERENCE – ROMANIA 25-30 May 2015 – Janne Bidenko

Irene and I travelled to Bucharest, the capital of Romania, leaving Sydney on Thurs- day 21st May arriving the evening of Friday 22nd, to attend the WFDB meeting over the

6 next 3 days. We stayed at the Grand Marriott Hotel. On the last day of the WFDB meeting, 25th May, we attended a Conference Welcome Cocktail Party at 7PM, also held at the Marriott where the Conference was to start next day. The theme of the Conference was “Local Solutions to Common Needs”

While I had intypreted for Irene during the WFDB meeting for her to read on her Braille display, all the Conference rooms had Hearing Loops which Irene could use, so we decided to make the most of the Conference information, to bring back to Aus- tralia, by mostly attending different workshops, only the plenary sessions and last day of conference together. It was a very full on Conference with workshops starting at 9AM and finishing at 6PM.

Tuesday 26 AM – Opening Session and theatrical performance by children of Helen Keller’s life.

Tuesday 26, 2PM – Irene, “Autonomy for dual sensory impaired older adults – similar- ities and differences between deafblindness and dual sensory loss” Janne, “It is never too late…” a session from Denmark about it never being too late to teach people with congenital deafblindness to communicate, with a DVD show- ing how this can be achieved.

Tuesday 26, 3PM – Irene, “The use of tablet and smartphone for people with single & dual sensory impairment” Janne, “Sensory Champions as a model for health and social care providers”, which centred around how champions/volunteers can improve the social interaction of DB people.

Tuesday 26, 3:45PM – Irene, “Technical future requires Braille reading” Janne, “personalising Communication, Language and Literacy Instruction: Why individualising may not be enough”, which concentrated on how each person needs to have teaching according to the person not the disability itself.

Tuesday 26, 4:30PM – Irene, “Creating situations of communication” Janne, “Communication Concepts”, how confidence and knowledge are impart- ed to staff and the importance of reflective practice

Tuesay 26, 5:15PM – Irene “Do older adults have a future?”, ways to work with older people. Janne, “Changing traditional roles of client and professional”, developing ways of collaboration between individuals with acquired deafblindness and their service providers, what both parties need to develop an effective collaboration.

7 Wednesday 27 AM – Plenary “Education and Learning”, a presentation from Dave Power CEO Perkins School, on how organisations learn and evolve.

Wednesday 27, 2PM - Irene & Janne, “Ways to influence decision makers – using advocacy and campaigning”

Wednesday 27, 2:45PM – Irene, “Quick and efficient learning – new e-learning mod- ule about deafblindness” Janne, “Developing independent living services for newly identified adults with acquired deafblindness and long term communication deprivation”

Wednesday 27, 3:45PM – Irene, “Specialised training enables access to information by smartphones” Janne, “Intervenor training in England and Wales, 20years on”, what we need to know about training communication/guides.

Wednesday 27, 4.30PM – Irene, “The Australian National Disability Insurance Scheme: Silver bullet or lead weight?” the pros and cons of NDIS presented by W.A. Janne, “Effects of High Quality Communication Intervention”, talking about the often poor quality of interpersonal communication of people with congenital deafblindness and ways to change this.

Thursday 28, AM- Plenary Session – “Identity and Belonging”, exploring the concept of personal identity and how people with deafblindness develop their self- concept and become part of their community and the important role that emotional connection plays in all human functioning.

Irene and I were reminded here, of the value of HOH Club and our Logo “belonging” which started out as the Auslan sign for belonging and later developed into the same sign but featuring starfish.

Thursday 28, 2PM – Irene, “Regional TPG Clubs – as forms to shape identity and social activation of the deafblind”. Again these mirrored HOH Club, so Irene felt that we have been early pioneers of this. Janne, “Deafblind Ontario Services: Transitioning into Adulthood – tips and tricks!” This included different ways of transitioning, from one house to another, from school to programs/group homes/employment etc.

Thursday 28, 3:45 – Networks – Irene, Outdoor Network Janne, DbI Communication Network

The workshops finished at 5PM to give a chance to dress up for the Gala Dinner, which was very enjoyable with traditional dances performed by children from the Deaf School. There were also items performed by the year 12 students from a Bucharest 8 College, including a musical performance and a dance performance, as well as the MC being one of these students. These year 12 students were also the volunteers at the Conference, they were all wonderful.

Friday 29, AM - Plenary Session – Advocacy & Recognition, Lars Bosselman, Bel- gium drew on his experience in international advocacy and the importance of planning your advocacy endeavours well if they are to succeed.

Friday 29, PM – Irene and I went on the Bucharest “Must” tour for the afternoon, which we found very interesting and included the Parliament Palace which had been built by the dictator Nicolae Ceausescu, at great expense to the Romanian people, before he and his wife were executed for their great extravagances and causing deprivation to the people. We also visited a most beautiful large park on a lake, where very old original Romanian cottages had been moved to form a living museum.

Saturday 30, AM - Irene and I went sightseeing ourselves before catching the plane home in the afternoon. We visited the “Old Town”, where we took a long walk, ate lunch and visited the History Museum. Romania is a very different country to the sur- rounding countries as it was invaded by the Romans in 106AD, hence the name Ro- mania, it has a very Italian feel about it, and their language is the closest to original Latin, on which many languages including English, are based.

Monday 1 June - We flew into Sydney at 5AM, arriving at our homes about 7AM. 30 hour flights each way, but well worth it for such an informative conference and very good WFDB meeting.

NDIS INDEPENDENT ADVISORY COUNCIL PROGRESS UPDATE AFDO launches Disability Loop website 23 May 2015 Australian Federation of Disability Organisations (AFDO) is very pleased to launch the Disability Loop website at www.disabilityloop.org.au today. “Disability Loop aims to give people with disability and their families information about the National Disability Insurance Scheme (NDIS) that is up to date, easy to find and easy to use,” said Matthew Wright, AFDO CEO. Disability Loop is brought to you by the Australian Federation of Disability Or- ganisations AFDO is the national voice representing people with disability in Australia. Read more about AFDO on their website We'd love to know what's important to you Complete our survey 9 27 May 2015 Every three months the NDIS releases a report about how the trial sites are going. This is called the Quarterly Report. The NDIS have just released a new Quarterly Re- port, which shows that the NDIS is being delivered on time, within budget, and with high satisfaction from the people who use it. 30 May 2015 The Independent Advisory Council (IAC) is very important to the NDIS. It is an independent group of disability experts made up of people with disabilities, carers and service providers. This group gives the NDIS advice on how to make things as good as possible in the NDIS. This morning, Professor Rhonda Galbally AO, Principal Member of NDIA's IAC, presented a progress report to the NDIS committee made up of Australian Senators. The report included a lot of information about the important work that the IAC has been doing in the background to make sure that people with disability really do have choice and control when they are part of the NDIS. NDIS Quarterly Report (Quarter 3, 2014-15) out now Stephen's NDIS story Stephen has Usher Syndrome, which means he has both hearing and sight impairment. He says the NDIS works at its best with cooperation between participants and planners. Hi, I’m Stephen and my disability is deafblindness. It’s actually called Usher syndrome which means I have congenital deafness or hearing impairment really and blindness which comes on from around about puberty. Different people have different ideas from both sides – participants and planners. It’s really all about letting people know. Doing that cooperative exercise, so we all get the best that we can out of the scheme. The main thing is to know what you want and negotiate that with the agency – you won’t necessarily get exactly what you want but you’ve got to be prepared to negotiate. Stephen gets ready The more time you can spend in preparation the better your plan will be. Stephen thought about long and short term goals before he met with his planner. What is the NDIS Information Loop? Catherine McAlpine and Leah van Poppel from AFDO introduce the NDIS Information Loop Project at the 2015 Able Australia Deafblind camp. Find all resources

MINISTERS SIGN AGREEMENT FOR EARLY NDIS ROLLOUT 10 Media Contacts For Minister Fifield: Lydia Paterson 0409 792 081 For Minister Ajaka: Alasdair Cameron 0400 729 164

Tuesday 19 May 2015

The Commonwealth and NSW Governments today signed an agreement to begin the early rollout of the National Disability Insurance Scheme (NDIS) in the Nepean Blue Mountains area of Western Sydney.

Federal Assistant Minister for Social Services Mitch Fifield and NSW Minister for Dis- ability Services John Ajaka today signed the agreement at an NDIS service provider forum in Penrith attended by more than 150 representatives from more than 50 local organisations that work with children and young people with disability in the area.

Minister Fifield said the agreement underscored the Commonwealth and NSW Gov- ernments’ ongoing commitment to deliver the NDIS in full. “This agreement will deliver the NDIS to about 2,000 children with disability and their families in Western Sydney and the Blue Mountains,” Minister Fifield said.

“This agreement is great news for families across Western Sydney, who will get the support they need to help meet the needs of their kids and support them to achieve their goals and aspirations,” Minister Fifield said.

Minister Ajaka said that the signing of the Memorandum of Understanding is the next step in delivering a major NSW Government election commitment to bring the NDIS to the Nepean Blue Mountains a year ahead of schedule.

“I am delighted that NSW was the first state to sign up to the NDIS and is now the first state to rollout the Scheme beyond the current trial sites.” “This early rollout will allow much needed early intervention, and other services, to start flowing to people with disability, their families and carers from September,” Min- ister Ajaka said.

Under this agreement, young people with disability in the Penrith and Blue Mountains area and their families, will be able to work with Local Area Coordinators from July 2015 to get ready for the NDIS, and will start to work with planners to create their indi- vidualised funding package from September.

Ministers Fifield and Ajaka said the Commonwealth and NSW Governments were working closely to finalise the details of the broader rollout of the NDIS across the rest of the State from 2016. 11 MEDIA RELEASE – David Murray, ADBC

Australian DeafBlind Council (ADBC) is proud to have our President, Michelle Stevens and ADBC member, Stephen Hallinan in the media spotlight around Aus- tralia and the world this week.

Michelle and Stephen were interviewed by television and newspaper media yesterday about a world first trial of a new Braille device that helps deafblind people to make telephone calls. This high profile presentation recognises the value of good access to communication technology for deafblind people and the need to integrate this technology into main- stream communication. However a lot of work still needs to be done. Braille assisted telephone calls are not compatible for all deafblind people, particularly those who don’t use their voice. Many deafblind people still require support for communication, subject to availability of interpreters and their ability to interpret Braille formats.

ADBC would like to thank Phil Harper from Conexu Foundation and Ultratec for en- abling access to communication and technology for people who are deafblind. ADBC hopes this media coverage will encourage technology manufacturers and sponsors to assist the deafblind community with increased access to communication on all levels.

ADBC would like to congratulate Michelle Stevens and Stephen Hallinan on their historic achievements in making a telephone call with Braille assisted devices.

Media Release: 19 May 2015 from The Heraldsun newspaper (Victoria).

Phones for Deafblind

An Australian woman has become the first person to make a call from a Braille en- abled phone, designed for deafblind people. Michelle Stevens made an historic call from Sydney to her sister at the launch of the world-first phone trial yesterday.

Michelle said after hanging up, “That was awesome, absolutely amazing”

Media Release:19 May 2015 from SBS News

Deafblind Australian makes historic call with breakthrough Braille phone “ Victorian woman Michelle Stevens was born with vision impairment and lost her hearing years ago due to chronic ear infections. She's been unable to call people over the telephone using her own voice since. “It can be really isolating for deaf blind people,” said Michelle.

12 The 58-year-old has now become the first deafblind Australian to make a telephone call with the assistance of caption-to-Braille technology. Speaking at the launch of an Australian trial in Sydney, she said it was the “first time in a very, very long time where my sister has been able to hear my voice”. “There’s just one word I have for this - it’s absolutely awesome,” she said. The technology allows people with vision and hearing impairments to communicate using their own voice. People’s responses are then turned into captions that can then be interpreted using the Braille display. The Braille CapTel technology was developed by US phone company Ultratec and has been picked up by local non-profit Conexu Foundation for a six month trial. Michelle is one of five Australians taking part across NSW, Victoria and Queensland. “Now everyone who speaks with Michelle is going to hear Michelle,” Ultratec Director, Christopher Engelke said. “They’re not going to hear me or some other voice translating for her.” Stephen Hallinan is also taking part and said he was excited by the opportunity to communicate. "It's so powerful being able to use your own voice because you can convey so much emotion," he said. The technology could become increasing important in the future as the population ages with an estimated 330,000 people in Australia experiencing a dual sensory loss. The Australian trial will run alongside a US version, which has already gained interest from organisations including the Helen Keller School and the US Department of Vet- eran Affairs. YouTube Video (captioned) Video of Michelle Stevens having a telephone conversation https://www.youtube.com/watch?v=thWWvV2bPIs

DEAFBLIND AWARENESS WEEK GALA LUNCHEON - SATURDAY 27 TH JUNE 2015 – EVERYONE WELCOME

I wish to invite all Deafblind members, people from Ushers group, Forsight and other Group Homes, together with family members and staff, to this wonderful opportunity at the Parramatta RSL Club on Saturday 27th June. We will make it a fun day with light lunch, activities/performances and yummy prizes, as well as receiving firsthand information for Deafblind people and their supports on the planning processes for the NDIS.

13 This is has been made possible by JFA Purple Orange (a S.A. Organisation whose primary purpose is to raise funds for Disability) making funds available to People With Disability (PWDA) and in turn they employing a woman, Ann Penhallurick, to work with people and employ a person to work with Deafblind and Vision Impaired people on the planning process for the coming NDIS. The person employed is a very enthu- siastic young woman, Krystel Keller, and although she will not be at this lunch, Ann Penhallurick will introduce you to the planning process and arrange for future small meetings and consultations with Krystel.

We will need confirmation of numbers as soon as possible for catering, and we will also need the names of people needing transport, so please contact Janne [email protected] or phone 0432 570 210

VENUE: Macquarie Room Parramatta RSL Club Cnr O’Connell & Macquarie Sts Parramatta 2150 (please see below for best entry details) TIME: 11.30am for 12 COST: $20 RSVP: by 22nd June 2015, at the latest.

There is no right hand turn into Macquarie, if coming from the North. Travel along O’- Connell St, turn R into Hunter or Argyle Sts after Macquarie, then R into Pitt St which leads into Macquarie St. The RSL parking station is on the right, park in level 7 or 8, come down in lift and cross Macquarie St into RSL, remember to have your ticket ac- tivated at reception before returning to car.