NATIONAL FEDERATION OF BLIND
CITIZENS OF AUSTRALIA
NFBCA NEWS
March 1997
87 High Street
Prahran, Victoria, 3181
Telephone: (03) 9521 3433
1800 033 660
TTY: (03) 9521 1200
Facsimile: (03) 9521 3732
E-mail: bca@bca.org.au
ACN 006 985 226
Large Print- ISSN 1321-0343 Audio- ISSN 1321-036X Braille- ISSN 1321-0351
I am always pleased to report that NFBCA continues to grow in strength as an organisation and that around Australia our members actively continue to work to improve the quality of life for blind and vision- impaired people. This has been demonstrated again through recent activity in many States and particularly in South Australia and Queensland.
Last November our Adelaide Branch undertook a campaign to develop membership. This was supported by the Royal Society for the Blind of South Australia, through its regular mail-out to users of its services. This has resulted in almost 300 new members joining NFBCA. This brings our individual membership across Australia past 2,300 and I am looking forward to having 2,500 Individual members by the time of our Adelaide Convention in June.
In Queensland the Brisbane Branch is running forums in urban and regional areas during March and April. The forums, being held in twelve areas, are focussing on the advocacy needs of blind and vision-impaired people in Queensland. I particularly thank Terry Boyle as the President of the Brisbane Branch and Karen Knight, Branch Secretary, for their efforts in organising these forums.
In Western Australia our members have also been active. The WA Guild of Blind Citizens, which is an NFBCA Branch, will be holding a forum for members on 5 April. This will focus on many important issues for blind people including employment, recreation and access to banking services.
By outlining some of the activity in these three States I by no means want to give the impression that not much is happening elsewhere. The truth is that other States and Territories have been working hard too. In both Victoria and New South Wales our Branches and members continue to run Service Forums to identify the needs of blind and vision-impaired people. A common theme coming through many of these forums is that in many areas around Australia blind and vision-impaired people have problems accessing community services such as those funded under the Home and Community Care Program. We now need to work in conjunction with the blindness agencies in each State and with Local Governments to address the problem.
I am also pleased to report a positive outcome from the recent conference held by the Australian Blindness Forum. This conference, which was hosted by Royal Blind Society of NSW, brought together blindness organisations from around Australia to explore issues of common concern and to work on developing a strong national voice for the Sector.
NFBCA participated in the planning for this conference and Bill Jolley, NFBCA Executive Officer, June Ashmore, Vice President Disability Services, and I represented NFBCA during the conference. I believe that the running of the conference heralds a renewed spirit of co-operation and interaction between blindness organisations. I know that NFBCA will play our part in facilitating this renewal, as it can only have a positive impact on services to blind and vision-impaired people.
I would also like to take this opportunity to once again encourage members to think about joining with friends in Adelaide in June for this year's Convention. This issue of NFBCA News contains more information about the Convention. I am asking our regular Convention goers and others who have been members of NFBCA for some time to make a special effort to come to Adelaide to welcome our new South Australian members.
Convention will also see the presentation of the NFBCA David Blyth Award and NFBCA Certificates of Appreciation. Nominations for these will need to be in by 28 April. If you would like to find out the nomination details please ring NFBCA on 1800-033-660.
Finally I would like to thank all of those members who responded to NFBCA's Annual Appeal. Your support is sincerely appreciated and I can assure you it goes a long way toward helping us address issues of concern to blind people through our Advocacy work.
NFBCA News is now available in electronic form. Previously our readers have had a choice of large print, audio or braille. We can now offer NFBCA News on disk (ASCII format) or by e-mail. If you would like to receive NFBCA News in one of these formats, or if you want to change your hard-copy format to another one, please call Cheryl or Sandra in the NFBCA office and give them your preference.
It has been a very busy time lately, with lots happening, and much of my time has been taken up with management and advice on different projects being carried out by NFBCA. There will be full details of many developments and our achievements in the Annual Report which will be my major project for May, leading up to the Convention in June.
Congratulations: To Ros Sackley, to June Ashmore, to Milan Hudecek and to Keith Glover.
We noted in December that NFBCA President Michael Simpson has been appointed Deputy Chair of the National Disability Advisory Council (NDAC). Michael was the only survivor from the previous Government's Disability Council and he carries the portfolio on the NDAC of community liaison with the peak disability organisations and other bodies. Another NFBCA Member, Ros Sackley from Sydney, has also been appointed to the NDAC. This is Ros's first major national appointment, though she has had previous experience on the Disability Services Advisory Committee in the ACT, and we give her our congratulations and wish Ros every success in this new role.
June Ashmore, NFBCA's Vice-President for Disability Services, is always very busy and is a regular contributor to NFBCA News. June has recently become President of the Canberra Blind Society. We are very pleased with June's involvement and leadership at the local level in service delivery to blind people, and we are confident that her involvement with the Society will bring positive results for people in the ACT who are blind or vision-impaired.
Milan Hudecek is well known as the inventor of the eureka A4 braille computer. He has also marketed other devices including a talking compass and a reading machine. He was recently honoured on Australia Day as a Member of the Order of Australia. Keith Glover, a former ABC Broadcaster on the domestic service and on Radio Australia, received a Medal in the Order of Australia for his community service. This included presentation of the Sound Magazine for Royal Victorian Institute for the Blind for twenty years.
NFBCA now has a Web Page on the Internet. Barry Chapman, a long-time NFBCA member and experienced computer professional, has taken up the cudgels and put NFBCA on the Net. Our URL (Universal Resource Locater) address is http://www.bca.org.au. We intend to put NFBCA News, the NFBCA Annual Report, NFBCA Policy Statements and NFBCA Project Reports onto the Internet to increase their availability and promote ongoing discussion. We are also introducing electronic communication, firstly for Councillors and later on for Branches and outside organisations.
You can now also contact NFBCA by electronic mail. Our e-mail address is bca@bca.org.au.
In the past year Mary Ward has been a regular contributor to NFBCA News, as we have kept in touch with her investigations for NFBCA concerning the need for rehabilitation services, communication options and advocacy support by people who are deafblind.
We have also been very concerned about the unavailability of braille-based text telephones for people who are deafblind, especially the absence of a device which can communicate with TTY's used by people who are deaf. We asked Tim Noonan to carry out an investigation of the technical and regulatory aspects of this matter, and he has provided us with a comprehensive report. The bad news is that there is no simple off-the- shelf solution, so NFBCA is working with the Office of Disability and the National Relay Service Advisory Council to find an acceptable solution to this problem as quickly as possible.
Mary Ward has also been busy for NFBCA, determining the characteristics and acceptability of an NFBCA Identity Card. Many of us know the frustration and humiliation of being denied a service or being unable to make a purchase because we did not have the necessary form of personal identification - typically a current driver's licence.
We hope to launch the NFBCA Identity Card later in 1997. We expect that to start with the card will be restricted to people who are legally blind, thus having the secondary benefit of serving as a proof of blindness for concessions such as the two-for-one airfare discount. We expect that the card will contain the bearer's name, address, photograph and signature. We are completing formalities with the Attorney General's Department to ensure its accreditation with equal status to a driver's licence for use in financial institutions and on other occasions.
NFBCA is proud to announce the publication, in print, braille and electronic form, of "Everybody's Business: Consumer Information Access for People who are Blind or Vision- Impaired" by Gunela Astbrink. The report is the primary output of a research project carried out by NFBCA with funding support from Telstra Corporation.
The project studied information access by people who are blind or vision- impaired as consumers of products, services or public information from bodies such as telecommunications companies, banks and government departments. The project focussed on telecommunication issues because the telecommunications infrastructure and useability issues were considered to underpin many aspects of information access. The report is available from NFBCA at no charge.
We are continuing our work on the development of Standards under the Disability Discrimination Act. In particular, the crunch time for the Draft Transport Standard is almost upon us. We have been lucky that one of the representatives of the community of people with disabilities in the development of this Standard has been Kevin Murfitt. Kevin is an active NFBCA member, a frequent public transport user with his guide dog Yoey, and a strong advocate for people with disabilities.
We consider that the draft DDA Transport Standard is very good, particularly helpful to people who are blind or vision-impaired - bringing better signage, clearer pathways, more information and audible announcements progressively over the next few years. But not everyone wants a DDA Transport Standard, because its implementation is not without some cost to some transport operators. Please join the campaign and write to the Federal Government in support of a DDA Transport Standard. You shouldn't write a long and detailed letter, you don't need to know the content of the Standard, you just have to believe that more accessible transport will help people with disabilities and benefit the community as a whole. Please send your letters, in braille, print or on cassette, to Parliament House, Canberra, ACT, 2600. You should write to Mr Darryl Williams, Federal Attorney General, or Mr John Sharp, Federal Minister for Transport. Every letter sent counts for one hundred that didn't quite get there - so please show your support and join the campaign for Accessible Public Transport throughout Australia.
Last December Leslye Thies left NFBCA to take up a position in the community sector outside of the blindness field. Leslye worked for NFBCA for almost three years and made a significant contribution in Victoria in the provision of information, and in advocacy support on pedestrian safety, transport and education. She also brought to NFBCA a welcome focus on low vision and was a great help to me with our projects in Viet Nam. We say thank you to Leslye for her work and wish her happiness and success in her new career.
We are pleased to welcome Ivan Peterson as NFBCA's new Victorian Advocacy & Information Officer. Ivan has experience in the disability field in Victoria, a background in teaching and a clear commitment to positive consumer outcomes and self-determination by consumers.
By the time you get this edition of NFBCA News you should have received your formal notice for the Convention. You may also have received a follow-up request to make a donation to NFBCA. I do hope that many of you will come to the Convention this year. You will read later that we are making a special effort to include young people and to make it more affordable for younger members to attend Convention. I also ask you to consider carefully our request for your financial support, and I hope that you will donate if you possibly can.
It's hard to know where to start in outlining some of the features of this year's NFBCA Convention, which is to be held at the Grosvenor Hotel, 125 North Terrace Adelaide, from Friday June 6 to Monday June 9. All of the formal details are included in the Convention Notice which was mailed to members in late March. However, the exciting features that will make this our best ever event are perhaps better dealt with here in NFBCA News.
But where to start!
The Blindness Service Seminar will feature:
Later in the morning, attendees will hear reports on various research and development projects undertaken by NFBCA over the last twelve months.
On Saturday afternoon we will focus on "Living in the Community". Rick Thompson, from Queensland, will give the keynote presentation "Recreation - something to offer for everyone" before a panel of members looks at "Living with a Vision Impairment - what are our real needs?". The later part of the afternoon will then be given over to workshops and informal discussion groups. In particular, members will be able to look at issues relating to living in their community.
Sunday's program will commence with the formal business of the NFBCA's Annual Meeting. This will be followed by the feature "Blind and Vision-Impaired People in the Workforce" in which we will hear about employment expectations in the 1990's, and a second presentation from Paul Edwards looking at the employment situation in the USA.
After lunch, and the conduct of the all-important election of
members to the NFBCA Council, the employment theme will continue
with a series of "Employment Snapshots" in which NFBCA members
will speak about their employment experiences. A special
invitation is being extended to
younger blind people from South Australia to attend Sunday's
program in order that they can learn of the diverse range of
employment undertaken by blind and vision-impaired people
throughout Australia. This group will then have the opportunity
to hold its own get-together later on Sunday afternoon.
As usual, the Monday program will centre on the debate of resolutions which will shape NFBCA's policy work over the coming year. Convention will conclude by around 3.00 pm on Monday afternoon.
Convention 97 is not only for NFBCA members. Over recent years we have been pleased to welcome many first timers who have not been part of the organisation. Further information about Convention 97, including Registration and Accommodation details, is available from the NFBCA Office on 03-9521-3433 or 1800-033-660.
See you in Adelaide for Convention 97 - it'll be a beauty!
NFBCA members, aged 16 to 27 years, wishing to attend their first NFBCA Convention can now qualify for financial support to offset travel and accommodation costs.
At its meeting on 12 March, the NFBCA Executive finalised plans for Leadership 2000.
In announcing this program NFBCA President Michael Simpson said
"We have, for some time, been concerned that younger blind and
vision- impaired Australians have very little opportunity to mix
with one another, to learn from each other's experiences and to
address the issues that are of concern to them. Through
Leadership 2000
" we hope to encourage up to ten younger blind or vision-impaired
people to come to Convention 97, where they will have the
opportunity to share their experiences and ideas and to
contribute to the future of our organisation."
Through "Leadership 2000" NFBCA will meet the cost of discount airfares and accommodation for Convention attendees who:
NFBCA will also meet accommodation costs. However, all meals and other costs are the responsibility of the individual.
Convention Registration must be paid for at the time of application. If the applicant is unsuccessful and will not be attending the Convention, fees will be reimbursed in full.
Application guidelines are available from the NFBCA Office, along with contact details for your local NFBCA Branch.
"Leadership 2000" provides a great opportunity for younger NFBCA members to attend Convention 97 and to be part of the future of our organisation.
In August last, my husband David and I attended the 9th International Retinitis Pigmentosa (IRPA) Congress and Visions '96 - a three day conference organised by the American Foundation Fighting Blindness. Both the Congress and Visions '96 were held at the Washington Hilton and Towers Hotel in Washington, DC.
IRPA must now look at a name change as a result of a unanimous decision to widen its mandate to include not only Retinitis Pigmentosa (RP) but also Usher Syndrome, Macular Degeneration and other allied retinal dystrophies. IRPA has no intention of usurping the role of already established organisations. However, it will endeavour to co-ordinate the research effort as there is significant overlap in relation to a range of retinal dystrophies and much is currently funded under the banner of RP.
What follows is a brief outline of scientific research from both the IRPA Education Day and from sessions at Visions '96.
Dr Bird, a well known Ophthalmologist from England, spoke at the opening session of the IRPA Education Day. He said that Retinitis Pigmentosa is typified by the presence of night blindness and the loss of peripheral vision leading to tunnel vision. In his view, loss of central vision associated with retinal damage should be attributed to a cause other than RP. He believes that peripheral loss together with central vision loss could indicate a combination of RP and something else or perhaps cone/rod dystrophy. Therefore, he urged patients not to rely on a diagnosis made on clinical examination alone and suggested that they should have a full battery of tests including electrophysiological testing. The results of testing, together with a family history, can then offer a better chance for a positive diagnosis which leads to knowledge about the likely progression of the disease and common inheritance patterns.
Australian, Dr Jonathan Stone, talked about his current research using transgenic mice. The mice are being raised in an oxygen rich environment in an effort to prove that photoreceptor cell death can be arrested.
Over the past ten years, some ten genes responsible for RP have been identified in laboratories all over the world. In the USA, researchers seem to be targeting their resources on the identification of more genes. There is some work, as yet not showing much progress, on the transplantation of foetal epithelial cells into the human eye. The cells have not been rejected but there is no evidence to show that an improvement in vision has resulted from the transplantation.
Scientists believe that there is some evidence to show that Age-related Macular Degeneration has a genetic origin but that there are probably several genes in combination that give rise to loss of central vision in later life. It was interesting to note that in surveys in Japan, the incidence of Macular Degeneration in the cities was high, but was non-existent in rural areas. One may draw the conclusion that environmental factors could be influencing the incidence of Macular Degeneration.
When the eye is prodded with a needle, immensely brave, totally blind human subjects have been able to perceive flashes of light. This has lead to some experimentation into using small electronic chips inserted into the retina. The researcher sees his project as long term.
At the present time, the only treatment being recommended for people with RP is Vitamin A therapy, and only then for people with some remaining peripheral vision. Dr Berson, who conducted a six year clinical trial using Vitamin A on human subjects with RP, was present at the Conference. As a result of the findings of the trial, Doctors in America are recommending this treatment and no adverse reactions have been recorded. Adults should take 15,000 international units of Vitamin A, in palmitate form, per day. It is not recommended to use any other form of Vitamin A. Dr Berson suggests that individuals wishing to use Vitamin A, should have a liver function test and tests to establish Vitamin A levels in the blood, prior to using the treatment and at intervals thereafter. Pregnant and lactating mothers should not use the treatment. As children were not included in the study conducted by Dr Berson, parents should consult their Ophthalmologist who can advise them.
Dr Berson said that the trial showed that Vitamin E was contra-indicated for people with RP. He was reluctant to recommend the use of Vitamin E in any other retinal conditions, but suggested that, if individuals were accustomed to using Vitamin E for improving vision or for any other reason, they should continue with their current regime, but that they should not exceed 400 units per day.
Dr Berson was asked about diet and recommended varied fresh foods with lots of leafy green vegetables, especially for people with Macular Degeneration. Some other homeopathic treatments like the use of bilberry were not seen to be harmful, but care should be exercised when taking substances that rapidly increase the blood flow to the eye. It is always advisable to consult your own Ophthalmologist and to gain information from accredited RP Societies and Associations before embarking on a course of treatment that may be questionable.
Visions '96 covered an extensive program over three days and nights. The most interesting and inspiring aspect of the conference was the emphasis on providing discussion and science sessions of particular interest to people with Usher Syndrome and providing the means for good communication by and with the many deafblind people present. Usher Syndrome is a genetic condition involving deafness and also vision impairment which is due to Retinitis Pigmentosa. According to the scientists present, there are three types of Usher. Usher 1 features profound deafness from birth with symptoms of RP developing in the first twenty years of life. Usher 2, which seems more common, features mild to moderate deafness with symptoms of RP, again developing some time during the first twenty years of life. Usher 3 is more rare, being almost the same as Usher 2, except for the fact that hearing deteriorates over time.
The most delightful part of the Congress was to see many children with Usher 1 and 2, dancing to a Beatles look and sound alike band, with a very energetic person singing and dancing on stage. Everyone had a really good time, and there were little groups of people singing to one another dotted everywhere. I understand that the Foundation spent $40,000 on providing interpreters and other aids for people who are hearing impaired. Every cent was well spent.
People with profound deafness and vision impairment functioned with ease in crowded situations and were the first to make statements and ask questions.
I would like to tell you about the guide dog, or rather, dog guide organisations in the USA, with particular reference to dog guides for people who are deafblind. There are fourteen organisations which train dog guides in the USA. I met a trainer from Leader Dogs who impressed me very much. He has trained dogs to guide people who are profoundly deaf and who have little vision.
In one of the sessions, a young woman named Isabel spoke about the use of a dog guide for deafblind people. Isabel is profoundly deaf and partially sighted. She is married with one child and works in rehabilitation. Through an interpreter, she talked about her experiences with Leader Dogs. Her first dog died at twelve with cancer, and Isabel felt the loss tremendously. She taught her first dog to understand sign as she does not speak, and it took a long time. Her second dog was trained by Keith from Leader Dogs. He taught the new dog to respond to sign instead of voice commands, and so the settling in period was easier.
Fifty percent of Leader Dogs are bred by the organisation, the remainder being donated or rescued from the local dog shelter. Not all the dogs at the Congress were Leader Dogs, but without exception, their general well- disciplined behaviour and lack of any signs of aggression was a pleasure to observe. In five days, the only sign of the presence of some twenty- five dogs was the occasional shaking of a chain. The dogs are, in general, fairly tall and rangy, with the look of a retriever.
There were a number of German Shepherds that appealed to me very much. People trained with a dog by Leader Dogs own their dog. There is no formal follow-up after the initial settling in period, but trainers respond to requests for assistance.
People with RP should note that none of the guide dog handlers were totally blind and some had good reading vision. With a guide dog, they walked with confidence.
Concurrent sessions are not popular in Australia, but worked well at this conference. The reason is that after dinner each night, small rooms were set aside with a facilitator to discuss informally the four workshop topics of the previous afternoon. It makes a long day but at least everyone had a chance to talk. Workshop sessions ranged from working with Braille to use of a guide dog, from technology to "when to give up driving".
There has been criticism on the Internet of the costs involved in attending Visions '96. It is almost impossible to cater for the needs of a large group of people in accommodation settings that are below average costs. If such a setting can be found, it is usually outside city limits with consequent hardship and travel costs for vision-impaired people wishing to attend. At the Washington Hilton and Towers, we had four star accommodation at a reduced rate, and, although meals were expensive, there were any number of good cheap eating places within walking distance. There were enough workshop rooms to accommodate all sessions; guide dogs were given an area to use that did not require crossing a road; and the huge ballroom was large enough to seat over 1,000 people who attended the opening session, complete with the Army Band and Trooping of the Colours.
The Americans with Disabilities Act (ADA) is working well for people with RP. I met a young man with RP who has tunnel vision and night blindness but is mobile without aids and reads well. He is an electrician who works for a large company in California. His Manager found out that he had a vision impairment, and he was immediately dismissed at age 35. He had not experienced any difficulty in maintaining his workload. After a long battle, for over two years, he was reinstated in his place of employment. He believes that he is the best person to judge when he is unable to work in his present capacity, and his employer will need to make every effort to provide reasonable adjustment when this time arrives.
My most vivid memory of the month of August was fun, fun, fun. With all the serious discussion on genes and blindness and therapies and services, there was an insistence that the work finished late in the afternoon, and then the fun started. Everything went to a timetable, no lingering over dinner; the table was cleared and the band struck up.
Perhaps we could take a leaf out of their book and build more fun into the Conferences we organise and attend.
I am most grateful to the Australian RP Association who paid registration and conference fees for myself and David in our capacity as Australian Delegates to IRPA. I am also most grateful to NFBCA for covering expenses incurred by myself as the second Australian Delegate to the Womens' Meeting and General Assembly of the World Blind Union.
Ansett Airlines has recently introduced a new method of ticketing to streamline its booking process and dispense with the need to send paper tickets to customers. The new method of ticketing, called E TICKET, is currently operating parallel with the old method. However, the old method of sending out a paper ticket will eventually be phased out.
In using E TICKET an Ansett customer is sent a confirmation note of the booking which shows all flight details. On checking in at an airport the customer is asked for flight details and some form of identification to verify that they are the legitimate traveller. The forms of acceptable identification include valid photo identification - either a driver's licence, credit card with photo, passport or State or Federal Government Employee identification. Other non photo identification such as a valid Global Rewards membership card or Golden Wings card (these are Ansett's Frequent Flyer programs), Ansett Pass or Ansacare membership, or a valid debit/credit card in the name of the traveller, are also acceptable.
If you are a regular traveller, and you have special needs because of vision impairment or blindness, you may choose to register in the Ansacare program. As an Ansacare member you will be able to register your particular needs with Ansett so that any time you book a ticket or check in for a flight your needs will be attended to. You will also be able to use your Ansacare number as your identification for the E TICKET.
To obtain more information about registering with Ansacare or to find out more about E TICKET you can call Ansett Loyalty Programs on 131 727.
Within the mix of new technologies that are fast becoming part of Australian life, the introduction of Digital Radio Broadcasting (DRB) within the next five years, has the potential to be of major value to people who are blind or otherwise "print handicapped".
DRB will deliver a range of voice, data and visual material to portable, mobile and home receivers, virtually anywhere in Australia. The signal will not be subject to fading or the interference that plagues current AM and FM broadcasting. While the sound quality for music, drama or other live programming will be indistinguishable from that of a Compact Disk, a digital radio channel can be split to provide up to six discreet high quality voice programs at any one time. In this way program providers will be able to deliver a vast range of material, including services designed to meet the particular needs of small sectors of the community such as people who are blind or otherwise print handicapped.
On this basis it is anticipated that Digital Radio Broadcasting may offer many solutions to the information deprivation experienced by people who now cannot access the printed word.
On the other hand, there is an inherent danger that the system itself might incorporate features and functions that deny or limit its useability by people with a print disability. For example, text and pictorial information will be transmitted as part of the total digital signal. Some information may be presented visually so as to free up airtime for the delivery of additional music, drama, or whatever else programmers see as essential audio material.
For people with a print disability such a migration of essential information to a visual presentation could constitute yet another access barrier. Similarly, it is expected that, as with modern television receivers and video recorders, much of the operation of the sophisticated receivers will be dependent on visual cues and menu choices.
For these reasons NFBCA, in association with the Australian Council for Radio for the Print Handicapped (RPH Australia), is undertaking a research project which seeks to ensure that:
This project is funded through the Office of Disability Research Grants Program. I am undertaking the project work, supported by a Project Advisory Committee which comprises: Bill Jolley, as Project Manager; Stephen Jolley, Chairman of RPH Australia; Glen Mahoney, who until recently has been Manager Information Services with the Association for the Blind; Frank Nowlan, Manager Privacy, with Austel; Peter Simpson, Systems Planning Engineer with the Seven TV Network; and, David Sice who is a Consultant Broadcast Engineer and a member of the Digital Radio Advisory Committee.
Monitoring developments toward DRB implementation
During June and July last year I had discussions with many of those who are central to the development of DRB in Australia. Among these, meetings with Colin Knowles, General Manager Planning with the Australian Broadcasting Authority; David Soothill, Director of Planning and Communications with the Special Broadcasting Service; and David Sice, from the Community Broadcasting Association; were of particular value.
These people are members of the Digital Radio Advisory Committee which was established by the Minister for Communications to develop recommendations on the policy and practical implications of introducing Digital Radio to Australia. In September the DRAC released a discussion paper "Digital Radio Broadcasting in Australia". This summarises developments toward the introduction of DRB. It explores a number of implementation models and identifies issues that need consideration before the Advisory Committee can make recommendations on a service development and delivery strategy.
Our response to the discussion paper was finalised in October. In this we identified some of the opportunities and threats that might result from the introduction of DRB. We reminded the Committee of broader Government policy and legislative considerations such as the Disability Discrimination Act and Disability Strategy and pointed out how these will need to be complied with in order to ensure Universal Access to DRB. We also addressed a number of the technical issues raised both from the perspective of print handicapped users and on behalf of our RPH Services.
Overseas Visits
In association with my attendance at the World Blind Union General Assembly in Toronto, in August, I was able to meet with key people involved with Digital Radio and information access in both the UK and North America.
In the United Kingdom I met with both Technical Research staff and Service Managers with the Royal National Institute for the Blind. RNIB staff had assembled a lot of material relating to DRB implementation by the BBC, and DRB developments under the Euro-DAB project across the European Community. It was however clear that prior to my contact neither RNIB's Chief Scientist nor Broadcasting Policy Officer had explored in detail the potential impact of DRB for blind and print disabled people. Nonetheless, our meetings were most productive in exploring potential problems and opportunities and resulted in agreement to work co- operatively in this area in the future.
Unfortunately, despite our direct approach and supportive contact from RNIB, it was not possible to meet with those officers within the BBC who carry policy management responsibility for its DRB implementation work.
The BBC has been transmitting several program services on a continuing basis, via a DRB transmitter in the London area, since September 1995. Work is underway to expand coverage of this "ensemble" of radio channels, so that within two years they will have coverage for 60% of the population. The delivery system being introduced is the Eureka 147 System. This is the solution proposed for Australia, although the British Authorities have allocated frequencies in the VHF band (around TV channel 12) rather than the L Band frequencies (1452-1492 Mhz) proposed for this country.
For some years data transmission services have been offered in the UK (and elsewhere in Europe) in association with FM broadcasting services. Use of these Radio Data Services (RDS) has centred on station identification with some limited applications for weather, traffic and news information. In the main the display facilities built into radio receivers have been limited to one or two short lines of LCD characters, often as part of the receiver's status information display.
While consumer take-up of this information service has not been strong, it is clear that the BBC is building its DRB data provision protocols on to those existing for RDS. From our perspective this approach is concerning as the RDI authoring system that is used is a proprietary one and does not appear to lend itself to conversion to standardised interfacing protocols.
Given their advanced state of development, the size of the UK market for receivers and their proximity to the European equipment manufacturers, the protocols that are being developed in the UK for data transmission services, both as discreet channels and associated with audio broadcasting, will no doubt directly influence European receiver design and thereby the parameters that are applied in Australia.
In Canada meetings were held with:
While Government and Broadcasting Industry representatives had not given thought to the issues addressed by this project, they readily understood our concerns and were most helpful in suggesting international avenues for our advocacy on these matters.
Officers from the Canadian Government also provided much written information on their policy development work. Among the publications produced for their "Taskforce on the Introduction of Digital Radio", two will have particular value during later stages of this project:
Meetings with senior personnel from the Canadian National Institute for the Blind were also most productive as, while they had not specifically addressed the issues of this project, the organisation has an ongoing substantial involvement in matters relating to information access and has applied its resources to solving information access problems in the past.
At the time of our meetings, CNIB was hosting the WBU General Assembly, with the result that the organisation currently has a very high profile in the Canadian community and with Government. As a result CNIB's interest and support for our project was well timed, both in the Canadian context where Senior Officers were able to draw attention to our project in their discussion with Government Officials, but also as the World Blind Union meeting provided a forum for direct contact with blindness advocacy, disability service and adaptive technology specialists from various parts of the world. These contacts stimulated much international interest in the project and its potential impact, with the result that delegates from several countries have offered their support in disseminating the final report as an advocacy tool for use at the international level.
The USA situation is however significantly different. While much of the early experimental work on DRB occurred in the USA, development there is well behind that of Canada, the UK and several other European countries. This is largely because of a fundamental difference in approach between policy makers in USA and elsewhere.
In Canada and European countries where DRB is currently being implemented or trialled a policy decision has been taken to develop services on new broadcasting band frequencies so that broadcasters might simulcast their programs on new DRB channels while maintaining their existing FM or AM coverage. The Eureka 147 delivery system has been developed for use in such circumstances and this has now been accepted as the international standard for such transmissions.
In the USA however, competition from other users of the L Band frequencies and a desire on the part of existing powerful commercial broadcasters that they should not loose their competitive advantage, has meant that an "In-Band" approach has been agreed to. The In-Band system will provide for the new technology to be superimposed on current transmissions much in the way that coloured television was introduced in Australia and elsewhere.
While this approach has certain commercial advantages for those who already have favourable transmission conditions, US developers have not yet overcome substantial technical difficulties and so in practical terms development is well behind that of Canada, the UK and Australia.
One of the consequences of this situation is that, while datacasting is technically feasible within the In-Band system matters around the broadcast of data services have not yet been adequately addressed in the USA.
Current Project activities
The next phase of this project was the conduct of a DRB focus group involving a number of NFBCA members. On November 18 & 19 we held an Information Access Seminar which looked at a number of policy issues around Information Access. This workshop involved around twenty blind and vision-impaired people with expertise in technology or knowledge and experience in information services. As part of this exercise we provided a detailed briefing on DRB development and sought feedback on opportunities and threats that might result for blind and other print handicapped people.
Following this, we have been seeking meetings with members of the Digital Radio Advisory Committee to formally brief them on our work and to test their reaction to our research to date.
All of this will then be drawn together into the final project report, to go to the Office of Disability at the end of March. Once this report has been cleared for publication our task will be to use this document as a key tool in an Australian and international advocacy exercise.
During discussion, both within Australia and in Canada, those involved with DRB implementation have stressed the significance of this year's Euro-DAB meeting and the Consumer Trade Shows to be held in Germany.
It is expected that major European electronics product manufacturers will release their consumer model Digital Radio Receivers at trade shows to be held in September. In order to meet this deadline decisions about such things as software protocols for data transmission and display will need to be agreed to by members of the Euro-DAB project during the first half of this year. If our project is to have some influence on these decisions we will need to submit our final report to Euro-DAB in April.
In her work on behalf of people who are blind and vision-impaired, NFBCA's National Advocacy & Policy Officer, Aileen McFadzean, has to manage many frustrations and some disappointments. It is therefor particularly pleasing when someone takes the time and trouble to write to acknowledge her efforts. We thought this letter from Richard Podger was particularly nice.
Dear Aileen
As you are aware, recently you supported me in an equal opportunities case. Because of your professionalism and determination to succeed, you have opened up greater opportunities for vision-impaired (blind) people and I would like to thank you very much on a great success.
I feel that the Federation does a lot of good work for vision-impaired people and I would like to commend you and further recommend your organisation (as I presently do) to other vision- impaired and blind people. Because of the discriminations and misunderstandings of the needs of people who are either vision- impaired or blind, I feel that your service can be of great benefit to people like myself.
I have been working with people with vision impairment and other disabilities, placing and supporting them in work. There are some names that you would know who we have placed in full-time employment with equal opportunities. In this regard I feel that we are working along the same lines.
Thank you again and I look forward to keeping in touch.
Richard Podger
On December 7 & 8 1996, the Disability Council of NSW hosted a forum for blind and vision-impaired women. Present were twelve women from around the State, five guide dogs and a baby.
Joan Ledermann was awarded $10,000 by the Disability Council of NSW to enable her to attend the Women's Forum held in Toronto prior to the General Assembly of the World Blind Union last August. The grant also allowed her to communicate what she had learned at the forum to a representative group of NSW women. Women of all ages and with varying degrees of vision loss were able to hear Joan's report, including women from Sydney, the North Coast, Broken Hill and the ACT. Both June Ashmore and Joan shared with us their experiences of the Toronto forum and the inspiration they gained from a gathering of around 400 blind and vision-impaired women. Joan also talked about her four years of work on the WBU's Committee on the Status of Blind Women. This committee has organised skills development conferences in all WBU regions but one - a remarkable achievement which should bring women to greater prominence in the WBU in the future. Joan's address demonstrated what our own experiences over the weekend bore out: that individuals' outlooks can be changed just by gathering together and sharing information and experiences.
The forum provided women attending with an opportunity for skills development. All are active in our own communities, and it is hoped that we will be able to participate more effectively and to empower other women in those communities by using what we learned. We participated in workshops on mentoring, utilising the media, conflict resolution, and effective meetings. The emphasis was on empowering us. Blind women are all too often expected to be dependent, submissive and polite. Such attributes would not enable us to cope with the stresses of daily life, such as wondering how many taxis will drive off when they see our guide dogs or deciding how to confront the repair person who has parked a truck in our path. Due to our excellent presenters and the constructive contributions of everyone, I think we all now have new ideas on ways of ensuring that our viewpoints are expressed and listened to.
As an NFBCA Council member, I particularly welcomed the chance to meet such a diverse group of women. Most are members of NFBCA and all are involved in some way in improving the lives of blind and vision- impaired people. Some strive for disabled parking spaces, some for better access to government offices, some for safe footpaths and some work to ensure that other blind people are not isolated in their communities. The other highlight was a dinner held on the concourse of the Opera House. In these relaxed surroundings, we were able to get to know each other on a less formal basis and to find out ways in which we could support each other.
I would like to thank Joan Ledermann, Lynne Davis and the Disability Council for their vision and hard work in planning and staging the forum. I hope the concept will be adapted for other groups. As WBU committees are reconstituted after each General Assembly, I would also like to express our appreciation to Joan Ledermann for the effort she has made in voicing the concerns of blind and vision-impaired women around the world and in being such a caring and committed ambassador for Australian women.
My attendance at the WBU meeting in Toronto, opened my eyes, quite literally, to the diversity of need in the communities of people who are blind or vision-impaired throughout the world. While recognising this diversity of need we were asked, by speakers from the many different regions, to aim for equality of citizenship within our countries. We were urged to refuse to view social acceptance as integration and not to mistake praise for true equality.
I will try to relate to you, my impressions of what is happening within the WBU and, more particularly, within our "East Asia Pacific Region".
The WBU is the united voice of blind people and service providers throughout the world, fighting the effects of blindness rather than blindness itself. It contributes, through its various committees, to the development of documents within the United Nations, e.g. the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. The WBU develops policies and encourages programs and partnerships to grow within the family of the WBU.
I have no doubt that without David Blyth's Presidency of the WBU over the past four years, the numbers of women attending the Assembly as delegates would have been halved. In the process of working towards a more equal partnership in the WBU for women, he was ably assisted by Kicki Nordstrom from Sweden. Kicki drew, out of every Region, women who will be future world leaders. The way ahead will not be easy for them. Cultural differences in relation to the traditional roles of men and women will be an inhibiting factor that must be overcome in time. It was pleasing to see Kicki voted in as First Vice President of the WBU knowing that she will continue to work towards a more equal partnership for women within the WBU and Regions.
Both developed and developing countries brought forward, at the Assembly, a multitude of energetic and charismatic people who are role models for others in their country. There was a selflessness about these people, a sharing of knowledge and true humility that was impressive.
Both developed and developing countries are led by people who have the sole aim of ensuring, for coming generations of people who are blind or vision-impaired, a better quality of life and an equal partnership in their communities. Anurada Mohit from India is a young woman with such potential and power that she will be a force that can carry the interests of blind women and men forward in her country. Angeline Chand, from Fiji, works tirelessly to support people who are blind or vision-impaired in the island nations of the Pacific.
Young, vital Canadians and Americans showed their commitment to justice for all and individuals from countries in South America and Africa continue to fight for change in communities where life is very different from our own. Imagine living without our mod cons like electricity, without roads and pavements that make mobility possible, and with cultural norms that discourage relationships with others in your community.
Through the WBU, the partnerships that exist between countries provide positive assistance to the less well developed partner. The programs are designed to support even the most basic needs of people who are blind or vision-impaired. For example, a blind person in Africa may need, above all other things, to learn to feed themselves. Therefore, someone will arrange to teach them to fish and perhaps grow a few vegetables.
There was a huge display of technology at the WBU and people who are blind are seizing technology as their means of seeking a living wage. However, it was interesting to hear that they are not included in the statistics used by manufacturers involved in the development of technology. While Jaws 2 has been of benefit in accessing the Windows environment, the program was too late for many people who lost their positions.
Euclid Herie, a Canadian, is now President of the WBU. He is, of course, blind. He is also the President and Chief Executive Officer of the Canadian National Institute for the Blind, an enormous organisation that reaches people throughout Canada.
I was pleased to note that the special issues related to deafblindness and to blindness in the older age group were of interest to the WBU. Following decisions made at the first meeting of the current Executive, work in these two important areas will continue.
The WBU functions in seven regions. Our region, the East Asia Pacific Region, includes Japan, China, Hong Kong, Korea, Vietnam, the Philippines, New Guinea, Australia, New Zealand and the Pacific Islands. The newly elected President for this Region is Mrs Grace Chan, Executive Director of the Hong Kong Society for the Blind. She is a strong and powerful woman who will be a good ally for women in our region. Others on the regional Executive Bill Jolley, Executive Officer of the NFBCA, Masahiro Muratani from Japan and Oscar Taleon from the Philippines.
At the present time, I have a co-ordinating role regarding women in the region. I have written to a woman identified in each country of our region with a view to developing a network. The eventual aim of this network is to provide women in each country with the means to support one another and to form useful partnerships with other countries.
I am grateful to have had the opportunity to be an Australian delegate at the General Assembly of the WBU. Through my involvement at a regional level over the next two years, I hope to encourage, women of all ages, to become part of a growing network in the region.
Last October, I was privileged to participate in the Fourth International Conference of the Cochrane Colloquium in Adelaide as a consumer representative of NFBCA. The Cochrane Collaboration is the coming together of the 13 Cochrane Centres around the globe. (Australasia's Centre is located at Flinders University in Adelaide.) The mission is stated as: "The Cochrane Collaboration is an international organisation that aims to help people make well-informed decisions about healthcare by preparing, maintaining, and promoting the accessibility of systematic reviews of the effects of healthcare interventions."
The Goals of the Collaboration are:
1. To ensure high quality, up-to-date systematic reviews are available across a range of health care topics;
2. To promote access to Cochrane Reviews;
3. To develop an efficient, transparent organisational structure and management system for the Cochrane Collaboration; and
4. To achieve sustainability of the Cochrane Collaboration.
Several objectives detail how consumers are to be involved in the various processes, such as 1.1.12, "Ensure that the Cochrane Consumer Network contributes to improving the quality of reviews." The Collaboration is committed to consumer involvement and has set up a Consumer Network to ensure that consumers are involved at all levels.
Consumers have two elected representatives on the Steering Group, sit on Centre advisory committees, do hand searching of research articles, function as part of Working Groups, have become reviewers, are commenting on reviews and protocols, and are involved in numerous other ways.
It is however felt that "consumers are too thin on the ground", and Hilda Bastian, one of the consumer reps on the Steering Committee, is anxious to see more consumers involved.
NFBCA has, for some time, been trying to impact General Practitioners (GPs). It has been difficult, and we have yet to see a way in. I'd like to suggest that by blind and vision-impaired people assisting in some aspect of the Collaboration, we are in there with doctors, researchers, and other healthcare professionals assisting to make information available that all of us, as consumers of healthcare services, want and need so that we can make informed decisions.
By participating in the various ways offered, we lead by example, thus letting GPs, medical researchers, and other consumers see that blind and vision-impaired people, who have access to appropriate education, training, and rehabilitation, are, in fact, competent and productive members of society.
Some will say, and rightly so, that this work is highly specialised. The Centre in Adelaide is doing several things to untangle the web. They are running workshops for consumers on a variety of topics, including understanding and using systematic reviews. They have developed a glossary for consumers (as the Collaboration has its own language which is key to understanding the work).
Those interested in knowing more about the Cochrane Collaboration can contact June Ashmore or Hilda Bastian (phone: 06 8204 5399 or 08 8278 5272; fax: 08 8276 3305; e-mail: hilda.bastian@flinders.edu.au).
You can join the Consumer Network as an individual member. Contact Hilda for a membership form. It's free, and a great way to be kept informed.
There are several Cochrane Groups already established while new groups are submitting proposals to be recognised within the Collaboration. The one of interest to most of us should be the Eyes and Vision Review Group. I met with people (Ophthalmologists, optometrists, and vision researchers) who are organising this review group. They are keen to have consumers involved, and they would like to see the research in this area extend beyond medicine to education and rehabilitation. This is quite exciting and has far reaching implications for blind and vision-impaired people.
The Group must prioritise its work, and research relating to prevention of blindness and deterioration of vision will come first. It is expected that during early 1997, this Review Group will be up and running, coordinated out of Moorfields Hospital in London, with Ophthalmologist Richard Wormald leading the way.
There is a true commitment among this group to partnership. It was the first meeting I remember attending where doctors, researchers, and consumers talked together on a level playing ground. I felt like my opinion was heard, and over and over, people thanked me for my participation and input. There was recognition that reviews must be user-friendly, not just in research/medical jargon, and efforts are being made to see how best to do this. Also, I had discussions with Mark Starr, the man setting up the Cochrane Library, which is the database of the Cochrane reviews. He is keen to make it accessible to blind people.
This is an important opportunity in which we all can participate. I hope you will contact Hilda to find out more about how you can be part of this exciting Collaboration, and that you will explore with NFBCA members how we can jointly make a difference.
Wouldn't it be wonderful if every woman coming to Convention this year would plan to arrive one day early and attend our Women's Branch conference! We need you, Branch members and potential Branch members, to work with us and help us to work with you. Details of time, costs and venue will be publicised as we know them ourselves.
But why have a women's conference anyway? Last year Fiona Woods, then President of this Branch, prepared and circulated a survey among Branch members. The replies were thoughtful and thought provoking. These she collated and they were reported to Branch members. They prioritized the interests of members concerning the directions this Branch should take in the future. They could not, and were not intended to, tell us how to accomplish the goals they set. That's what we hope this conference will achieve.
Time constraints and geographic distances make the regular branch meetings attended by other NFBCA members impossible for the Women's Branch. This conference will not be our Annual Meeting. It will be a time for working out how, in achievable bites, we can do the work our members believe this branch needs to do. So you see how necessary you are?
One priority of the survey will be achieved by Convention. And it's the very top one! Members asked for leadership training. The Executive thought long and carefully about this. If we ran a training workshop, or a hundred training workshops, some Branch members would still miss out on them, they wouldn't be within the geographic area of the workshops, they wouldn't be able to get time off to attend them, and our Branch wouldn't be able to afford to run them anyway.
What we can afford to do is to put our own training manual into the hands of anyone who needs or wants it. So right now we're collecting articles for it from vision-impaired women who have played leadership roles. Their experiences, practical advice and just plain common sense may not be quite as effective as a one to one leadership training course, but it's possible, and that wasn't.
The book will be launched at Convention. We hope to make it both helpful and practical, and something you can dip into when and as you need it. Do, if you possibly can, come to Adelaide one day earlier than you intended and join us at the Women's Branch Conference. You will be very welcome, and we need your input.
Many NFBCA members will recall meeting Pedro Zurita, Secretary General of the World Blind Union. Pedro has visited Australia and the NFBCA on several occasions including a visit in 1993 as Keynote Speaker for Convention and as our special guest at a dinner held in Melbourne.
We were shocked and saddened when, early in the year, we learned that Pedro had been seriously injured in a motor car accident while visiting Morocco on behalf of WBU. He received a nasty bump on his head and appears to have no other injuries. He spent two weeks in a coma. More recent news is brighter, as Pedro is now on the road to recovery. The following letter from Rafael Mondaca, Pedro's colleague at ONCE, the Spanish National Organisation of the Blind where the WBU Office is located, brings heartening news.
Dear Friends,
Some time ago you were informed on the unfortunate accident our Secretary General, Pedro Zurita, suffered when he was attending meetings in Morocco. We have received many expressions of affection during these days, and we are deeply grateful for that gesture.
Concerning Pedro's health, we are glad to inform you that, after an uncertain period, he is recovering satisfactorily. He has recovered consciousness and the major problem now lies in a breathing complication, which appears very often in this kind of patient. Due to this problem, they had to perform a tracheotomy, with the subsequent transitional discomforts.
Today (6th February) we have been able to visit him in a normal room, now that he has been moved from the intensive care unit. Although there remains breathing difficulties, it appears that the motor and neurologic systems have not been damaged. We now expect a complete recovery within a reasonable period of rehabilitation, during which he will receive the necessary medical and human support.
We wish to express our thanks on behalf of Pedro, his family, the Spanish National Organisation of the Blind (ONCE) and the World Blind Union for all your kind expressions of affection. We will endeavour to keep you informed on Pedro's progress towards his complete recovery, that we hope will be soon.
Rafael Mondaca, Manager international Relations, ONCE
There is a variety of ways in which you can assist NFBCA:
Naturally, we seek bequests only from those who have first made fair and adequate provision for their dependants.
Once you have decided to help ensure the future of NFBCA by making a bequest, it is important to seek professional advice. A "home made" Will can be perfectly legal, but there are pitfalls for the untrained - pitfalls that can lead to your estate being distributed in a way which differs greatly from your intentions.
If you wish to nominate that a specific amount or percentage of your assets be made available to NFBCA you could use a clause like the following:
"I give and bequeath free of all death estate or succession duties whether, State or Federal, to National Federation of Blind Citizens of Australia, 87 High Street, Prahran, Victoria the sum of ... dollars OR ... percent of my residuary estate."
Other options are:
For further details, please contact either Bill Jolley or myself at the NFBCA Office on 03 9521 3433 or 1800 033 660. Please be assured that all discussions are strictly confidential.
Following a membership drive late last year we are pleased to report that South Australia now has 410 members (a 200% increase). The Committee of the Adelaide Branch would like to welcome new members and invite them to participate in activities of NFBCA.
The 1997 Convention, being held in Adelaide in June, is an ideal forum to meet local and interstate members who have similar interests and issues affecting their everyday life. We therefore encourage as many members as possible to attend, either for the whole Convention or just for one day.
The Adelaide Branch Committee would also like to hear from local members on issues that are of concern to them or of services that are not being provided. Please contact Branch President Tony Starkey on 08 8289 2733 or Secretary John Bastiaans on 08 8251 1828.
The Disability Council of NSW is holding a forum in Sydney in June 1997. The Forum will examine Best Practice in Research from the perspective of people with disabilities.
A range of issues will be discussed including research and rights, research and wrongs, and research with consumers in the driving seat. We want to hear your views and experiences, so please come along.
For more information please contact Megan Fahey by telephone on 02 9286 7274 or by email at mfahey@discoun.nsw.gov.au.
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For further information please contact:
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INTRODUCING INFORMATION ALTERNATIVES
Accessing the Information You Need
For the latest information, news and interviews about blindness, the work of NFBCA and new technology tune to the NFBCA Radio Program. The program now has a new name and a new outlet. We call it "Horizons" because it's really about lifting expectations and being far-sighted in our vision of the future. Horizons is broadcast regularly on RPH stations, as detailed below, but you can now also hear the program on your local community FM station - especially if you live outside a capital city. "Horizons" is distributed by Comradsat, the Community Radio Satellite, each week throughout Australia. So if you want to hear the program, get on to your local station. It's amazing what a difference some inquiries can make. Now for the RPH broadcast schedule for Horizons.
1RPH 1125 KHZ, Canberra - 11.15am Tuesday; repeated 8.00pm Tuesday
2RPH 1224 KHZ, Sydney - 3.00pm Wednesday; repeated 5.00pm Saturday
2DRY 107.7FM, Broken Hill- 8.45am Friday
3RPH 1179 KHZ, Melbourne - 8.30pm Wednesday; repeated 5.30pm Sunday
4RPH 1296 KHZ, Brisbane - 7.00am Friday; repeated 6.05pm Monday
5RPH 1197 KHZ, Adelaide- 9.15pm Wednesday; repeated 10.15am Tuesday & 6.15pm Friday
6RPH 990 KHZ, Perth -6.00pm Wednesday; repeated 10.45am Thursday 7RPH 864 KHZ, Hobart -7.15pm Saturday; repeated 4.45pm Wednesday
The closing date for articles for the next edition of NFBCA News is Friday, June 23, 1997. Articles should be sent to Cheryl Gration in the NFBCA Office in print, preferably accompanied by a computer disk.