BLIND CITIZENS
NEWS
January 1998
Blind Citizens Australia
ACN 006 985 226
87 High St, Prahran VIC 3181
Tel: 03-9521-3433 or 1800-0330-660
Fax: 03-9521-3732 TTY: 03-9521-1200
Email: bca@bca.org.au
Web Page: http://www.bca.org.au
Bline Citizens Australia: the united voice of blind and vision impaired Australians. Our mission is to achieve equity and equality by our empowerment, by promoting positive community attitudes, and by striving for high quality and accessible services which meet our needs.
COPYRIGHT: Reproduction of articles appearing in Blind
Citizens News is permitted, provided Blind Citizens News and the
author(s) are acknowledged.
Large Print ISSN 1321-0343 Audio ISSN 1321-036X Braille ISSN
1321-0351
As this is my first issue of Blind Citizens News, an introduction seems to be in order!
I live in Sydney with my partner and two children, have been a member of the national Council for 3 years, and in a previous life was a university teacher (I retired from that career in early 1997). I have retinitis pigmentosa, not much useful vision, and a dog guide named Stella. Post-retirement, I seem to have acquired several new careers, including editorial work. I'm looking forward to producing some interesting issues of Blind Citizens News, and I'd very much welcome your comments and suggestions in this regard.
This issue has a distinctly international flavour. I was privileged to meet Paul Edwards, President of the American Council of the Blind, at our Convention in Adelaide last June, and thought it would be interesting to ask him to reflect on what he observed while in Australia. Paul has very generously responded to my requests, nagging and harassment (essential components of an editor's job, I'm discovering) with an interesting, well-informed and thought-provoking article which draws comparisons between the blindness and disability fields in Australia and the United States. I hope you'll enjoy reading it as much as I did, and perhaps you might even be moved to write in response to some of the points which Paul makes in his article.
To even up the balance, Paul's article is followed by an Aussie's impressions of North American services for deafblind people. Trish James was the recipient of a 1997 Churchill Fellowship, and I'm sure you will enjoy her account of her travels to learn about services in the United States and Canada.
As well, Karen Knight tells us about her recent visit to the annual conference of our sister organisation in New Zealand and draws some interesting comparisons.
For this first issue of 1998 it seemed timely to reflect on the year just past, so there are a number of reports which review what was achieved in 1997, what was problematic, and what goals have been set for 1998.
By this stage I'm sure you will have noted the change of name. Michael Simpson explains all in his President's report below, and uses the new common usage name, Blind Citizens Australia. In other articles, the authors have used the full name, "National Federation of Blind Citizens of Australia, because that is how they are used to referring to the organisation. Over time, I imagine, we'll all become accustomed to the new name and use it automatically.
I'm old enough to remember the switch to decimal currency, and this change looks like very small beer compared to that one. Anyone out there still talking about pennies and shillings?
I hope you enjoy reading this issue of Blind Citizens News. My
best wishes to all our readers for 1998, and I look forward to
receiving your comments and suggestions throughout the year.
It is usual at this time of year to spend some time reflecting on the past twelve months, to consider just what sort of year it has been. With the old year being partied out and the new one being toasted in, it's a good time to sit back and look at just what has been achieved.
For me the year has been full of positive achievement, both personally and as President of NFBCA. There have been a couple of disappointments: however, I will just take them on board as challenges and deal with them later.
The matter I need to tell you about first is that the Council of NFBCA decided, at its November meeting, to adopt the common usage name of Blind Citizens Australia. The proposed use of this name was flagged in the last issue of NFBCA News, and given that there were no negative comments from members Council took a decision to adopt it straight away. The decision to use "Blind Citizens Australia" does not formally change our incorporated name from National Federation of Blind Citizens of Australia. However, it allows us to use a shortened version of this name. You may care to comment on whether or not we should formally adopt "Blind Citizens Australia" through a change to our Memorandum & Articles of Association at an Annual General Meeting of members.
Now to the year past. The year began well, with our office staff continuing to work effectively under the leadership of Bill Jolley. Our strong team was complemented by the appointment of Ivan Peterson as Victorian Advocacy and Information Officer in March, and Isabel Anton who joined us as National Advocacy and Policy Officer in July.
Our membership continued to grow strongly through the year, demonstrating that blind and vision impaired people are looking to us as the organised voice of blind people. At the time of our Convention in June our membership stood at just over 2,400.
The 1997 Convention, held in Adelaide, was a real highlight of the year. It was well attended and those members who were there took the opportunity to debate issues of concern to blind and vision impaired people. For me, Convention this year was made even more rewarding because of our special guests - Sir Ronald Wilson, retiring President of the Human Rights and Equal Opportunity Commission, and Paul Edwards, President of the American Council of the Blind. Their involvement was inspiring and certainly set us some challenges.
Another highlight was NFBCA's Horizons Seminar which was held in the days leading up to Convention. This seminar brought together fifty people from blindness agencies to foster co-operation between service providers and to inform services managers about new service initiatives. The positive feedback we have received from the services managers who attended the seminar is one of the things this year which has given me hope that we can bring blindness agencies closer together.
Other positive indicators were the two conferences held by ABF - Australian Blindness Forum. These were held in February (hosted by Royal Blind Society, NSW) and in October (hosted by Association for the Blind, Victoria). The conferences were well attended by senior agency staff and representatives of Blind Citizens Australia, and the mood of co-operation was positive.
A major disappointment this year however has been our failure, as the organised representative group of blind and vision impaired people, to make any real headway in merging blindness agencies. We have continued to work with the Association for the Blind (VIC), Royal Blind Society (NSW), Royal Society for the Blind (SA), and Royal Victorian Institute for the Blind, through CABA - Committee of Australian Blindness Agencies - with a view to the merger of some organisations. This process began in December 1993 and here we are four years later having made no real advance. I strongly believe that through the merging of blindness agencies we could rationalise the cost of administration, resulting in more funds being applied to direct service delivery for blind and vision impaired people.
As the only national organisation in Australia totally governed and managed by blind people, it is vital that Blind Citizens Australia takes a leading role in shaping the future direction of services to blind people. As an organisation which takes a national perspective, it is also important to us that blind and vision impaired people have equal access to services no matter where they live. It is not okay for those of us who live in States which are relatively well served to forget or ignore the needs of our friends in areas with fewer or less responsive service providers.
The challenge for all of us, especially those in positions of influence such as agency boards, is to make sure that we use the next year to bring about some positive change. We should not underestimate our ability to influence and shape the future through our membership of Blind Citizens Australia and our membership of the blindness agencies which provide services to us.
Two other special events for me this year have been the launch of Telstra Braille Bills, and my visit to Vietnam.
In September I was pleased to join Senator Richard Alston, Minister for Communications and the Arts, and Peter Shore, Managing Director, Commercial & Consumer, Telstra to launch the braille billing service for Telstra's blind customers. This was particularly pleasing as the need for account statements (such as telephone bills) to be provided in braille was one of the recommendations coming out of an important study undertaken by Blind Citizens Australia during 1996. The challenge for us over the next year is to implement some of the other recommendations.
A more recent highlight was my visit to Vietnam with Bill Jolley and June Ashmore in December. The primary purpose of the visit was to review our braille literacy project. This project is funded by the Australian Government and it was thrilling to see the difference the project is making to the lives of blind people in Vietnam. Through the work of Bill Jolley and June Ashmore braille literacy programs have been instituted in four provinces, with a further two programs to be carried out over the next 12 to 18 months. A full report on the visit will be featured in the next issue.
Finally I would like to acknowledge and thank all members for
your support during the past year. Your contributions of time,
energy and donations make my job as President a bit easier and
most fulfilling. My appeals for financial support are not
ignored which means that we can continue to work on behalf of
blind and vision impaired people in Australia. I wish you the
best for 1998 and look forward to making it a year of achievement
for blind and vision impaired people.
As we start our work for 1998 I take a moment to wish all readers a happy and satisfying year. For the Australian community generally, for the blindness field and for Blind Citizens Australia particularly, it promises to be a challenging year. The challenge for Blind Citizens Australia is to turn potential problems into specific opportunities as we go about our business of improving the well-being of people who are blind or partially sighted.
It is my sad duty to report the recent deaths of Michael Gamble and Ella Edwardes, both long-time Associate Members of Blind Citizens Australia from Melbourne, following age-related illnesses. Michel started his association with blind people as a volunteer reader for the Tertiary Resource Service of RVIB. I recall that he was much in demand in the 1970s, when I was a university student, for his ability to read mathematics, physics and computer programming texts with clarity and accuracy. Michael was an active member of the Victorian Supporters of Radio for the Print Handicapped Special Interest Branch. Ella was an active supporter of and generous donor to Blind Citizens Australia. I remember her great support back in the late 1970s when the national office was housed in Ray Hannah's lounge room in Hawthorn. Ella was a regular reader for Ray and Hugh Jeffrey, as they carried out NFBCA secretarial duties, and a willing helper with collecting and posting mail items. On behalf of NFBCA I extend our deepest sympathy to the families and friends of Michael Gamble and Ella Edwardes.
DDA Standards
1997 was a very busy year for the development of Standards under the Disability Discrimination Act (DDA). Blind Citizens Australia hosts the DDA Standards Project, with funding from the Attorney General's Department, and we employ Rose Ross as the Project Co-ordinator. Rose anticipates a very busy year in 1998, and I thank her for providing the following information for Blind Citizens News.
Accessible Public Transport
Draft Regulatory Impact Statement
Activity in the Transport area has been focussed on two main tasks: development of the Draft Regulatory Impact Statement and discussions about trials of equivalent access options to be used when an operator successfully argues that to comply with the Transport Standard would cause unjustifiable hardship.
All States and Territories reiterated their support for the Transport Standard at the last meeting of the Australian Transport Council but the Draft Regulatory Impact Statement has been significantly delayed due to the difficulty in calculating a realistic costing of the Draft Transport Standard. All States and Territories are currently completing a detailed survey designed to ascertain how much of the public transport system in Australia is currently accessible and what it actually costs to make it accessible. At this stage we expect the consultation on the Draft RIS to occur in July 1998.
Employment
Another draft Employment Standard is being distributed for consultation by the Attorney General's Department. This document has changed significantly in response to disability sector concerns that were voiced during the consultation on the last draft. We expect to hold a video consultation on this new draft early in March 1998.
Education
There was a meeting of the MCEETYA taskforce held in Adelaide on 3-4 December 1997 which discussed the responses to the consultation discussion paper.
There were significant differences between the views of education providers/administrators and the disability sector representatives.
It is fair to say that most around the table were stunned at the level and type of response the Discussion Paper received. Some peak disability organisations, not Blind Citizens Australia, are proposing that an Education Standard is not appropriate, in favour of mandated DDA Action Plans. On the other hand, there was widespread feedback from parents that a DDA Standard was necessary to protect the rights and promote equal opportunities for their children. Blind Citizens Australia supports DDA Standards, but we want them to be strong so that no rights are bargained away in the process of their development.
After lengthy debate the following agreement was reached at the MCEETYA Taskforce meeting in December.
The 1997 Variations Conference was held in December. This is the meeting of State/Territory building regulators who agree on changes to the BCA. Our representative at meetings of the BCA is June Ashmore. June reports that very good progress has been made during the year, although there are still a few outstanding issues.
Following a strong argument put to the Building Access Policy Committee in November by the disability sector representatives that all new schools should be fully accessible, the Australian Building Codes Board has referred this issue to the MCEETYA Taskforce on Education.
Commonwealth Government Information and Communications
There were very few responses to the discussion paper on this issue.
A meeting of Working Group held in December agreed to recommend that the Commonwealth Government adopt the HREOC Advisory Notes on Accessible Web Pages. This document will not be adopted as a DDA Standard, but rather will be a decision of government. The Working Group will now focus on two issues: appropriate use of TTY's by government departments and appropriate provision of information by government agencies.
Other Matters
Last November I attended the Executive Committee meeting of World Blind Union held in Morocco. Australia has lodged an Expression of Interest to host the Fifth General Assembly of WBU in the year 2000 in Melbourne. The Executive held over making the final choice until the Officers meeting in March. Australia's bid was well prepared and highly regarded. Australia's main rival is Morocco which, at the time of the Executive meeting, had not lodged its Expression of Interest in writing.
On the way to Morocco I attended a meeting of the DAISY Consortium in Madrid, representing Australian and New Zealand Blindness Agencies. DAISY stands for Digital Audio Information System and the Consortium is made up of organisations providing talking book and student library services to blind and partially sighted people. I expect that by the end of 1998 we should see the first talking books becoming available on compact disk. Consumers will either use a special CD player manufactured in Japan or the CD-ROM player on their computer.
A related development is the emergence of digital talking books and student texts over the Internet, and the availability of new software tools for accessing the Internet by speech - without the need to buy expensive screen reading programs or speech synthesisers. We hope that the new generation of telephone-based information services, giving access to specific information, newspapers and the Internet, will be available by the end of 1998.
In December I made another visit to Viet Nam in connection with the NFBCA/VBA Braille Literacy Training Program. I was also pleased to inform Viet Nam Blind Association of a donation of eight Perkins Braillers arranged through the Royal Guide Dogs Association of Tasmania. June Ashmore and Michael Simpson also went to Viet Nam for a week, which included a visit to Thanh Hoa province where the third training course will start in April.
We also had a meeting of the WBU East Asia Pacific Executive Committee in Ha Noi. The meeting was very successful and attracted good local interest with coverage in Viet Nam's nation press and on the radio and television news. The meeting agreed to accept the invitation of the Korean Blind Union to hold the Fourth WBU Regional Assembly in Seoul in June 1998.
We have previously given information about the launch of the Telstra Braille Bill service. Unfortunately, due to processing problems in Telstra, the service is not yet established. The delay is regrettable because the launch of the service in September, by Senator Alston as Minister for Communications and the Arts, created expectations from blind people which have not been fulfilled.
For further information you should call Telstra's Disability
Information Hotline on 1800-068-424.
When I was asked to prepare an article summarizing my impressions of Australia, I began by believing that it would be easy! The longer I have thought about it, the more difficult it becomes. I think that I must just take the bull by the horns and, like the Ugly American I am, simply let fly! So that's what I intend to do.
I published an account of my Australian visit in the July issue of The Braille Forum, the publication of the American Council of the Blind, which can be found on our website. In this article I will concentrate on talking about impressions and indulge in what Shakespeare assures us is an odious practice, that of comparison.
Inevitably, when someone comes from one culture to another, he is tempted to evaluate what he sees against the known background of his experience. For me, that's a rather broader canvas than just the American experience. I grew up in Canada and then spent 17 years in Jamaica and Trinidad. As a result, I became a cricket addict and also developed a better sense of the British approach to welfare than I might otherwise have had. While it is certainly true that Australia has gone her own way, I think the roots of services to blind people are still firmly buried in the British notion of welfare which places a greater reliance on private charity than it does on government expenditure. It's also a funny sort of environment in which to try to grow a consumer movement. Often the very best potential members of the consumer organization are also workers in agencies. This inevitably creates at the very least a kind of dissonance or ambivalence that makes it very difficult for those people to know just who they are. Are they full-blown consumers with undivided loyalties or are they professionals committed to the interests of their agencies which, to some degree, co-opt consumers?
I don't think this question is a minor one and it has shaped for good and ill the consumer value system in the Commonwealth. I am not at all suggesting that this is all or even mostly bad! In fact, the ambivalence leads to some really positive energy. There is a greater tendency, I think, to work in concert with agencies and to actually seek to reform them from within. There is also a tendency to see consumerism as one approach among many. Too often in other countries, including mine, blind people see themselves as pitted against the bureaucracy and they sometimes see the struggle as "us" against "them". There is little room for this black and white approach in Australia, and that may be just as well.
The other striking difference between services in Australia and those in this country lies in the fragmentation of service delivery in Australia. In the United States, services to blind people are based on a Federal agency which operates departments in states.
There are also a number of national organizations for the blind that have served to build a consensus about what appropriate services ought to be. What has evolved, then, is a national notion of service delivery that permeates the whole service delivery model.
This is good and bad! On the one hand, blind people moving to different parts of the country know what they can expect and can develop an understanding of the model that should make it as easy to manipulate the system in Florida as it is in California. On the other hand, the national model tends to discourage initiative and the absence of competition has tended to make for the creation of a service delivery system that values the status quo and is slow to respond to change.
In Australia, on the other hand, there is fairly fierce competition among agencies for the hearts and minds of consumers and for the dollars of potential donors. There is also little standardization and agencies tend to have very different approaches and values. I would suspect that one of the decisions that governs where a blind person chooses to live relates to the services available from the society in the state or city where he resides. Competition has led to duplication. Some agencies appear to recognize that there may be a need to cooperate more with each other while others cling tenaciously to their share of the pie and are fearful of the lessening of autonomy that increased cooperation might bring. And yet, the best agencies in Australia have a vitality and a commitment to both consumers and change that virtually no agency in this country is likely to be able to claim.
Australia does not have, that I could find, a national organization of professionals serving blind people. The United States and Canada have such an organization, now called the Association for the Education and Rehabilitation of the Blind and Visually Impaired.
There equally does not appear to be an organization that corresponds to the American Foundation for the Blind or the American Printing House for the Blind. Both of these organizations have shaped, through their efforts, the structure and values of service delivery for blind people in this country. AFB has done it by conducting research and using its resources to help to better define the needs of blind people and to set standards and outcomes for services. APH has less obviously had an impact on the education of blind children by annual conferences and the initiatives that have developed there.
The history of the consumer movement in this country is also very different. There have been organizations of blind people advocating for their rights here since the beginning of the twentieth century and the National Federation of the Blind was formed as long ago as 1940. Consumers have always operated independently of agencies and much of the impetus to create consumer organizations lay in a dissatisfaction with the services that blind people were receiving from agencies.
Many of the gains that blind people have made in this country were made in spite of rather than with the collaboration of agencies and, in fact, consumer organizations tend to distrust blind people who are too closely associated with agencies. As in Australia, there are specific privileges that apply to people who are blind which do not accrue to people with other disabilities. There is a minuscule tax exemption, a different rating under Social Security Insurance coverage and, in one state, Missouri, there is actually a blindness pension.
there are two blindness consumer organizations in this country. There were certainly times in our history when the existence of two voices claiming to speak for people who are blind created problems. I truly believe that, right now, blind people are well served by both organizations and that, on many issues, we speak with a single voice. The differences between our two organizations are many but, at the core, I believe that there is a place for both of us in this country. I don't think there is any likelihood that our two organizations will unite any time soon but I am committed as the President of one of them to cooperate with the other as often and as fully as I can. This is because, as in Australia, there is a real tendency to homogenize services delivered by the states to people with disabilities and to define services in ways that threaten the specialized services that blind people truly need such as braille and orientation and mobility.
When I was in Australia, I saw what I think may be the beginning of this same sort of tendency to put all disabled people into a single bag and shake them up. In part this has happened because of the Disability Discrimination Act. In part it's a result of people with disabilities developing new notions of who they are which transcend specific disabilities. And in part it's a consequence of the State and Federal governments looking more at the bottom line than at the quality of the services they deliver.
It may well be that what I have just described is a global trend. If it is, NFBCA and ACB and, in fact, every agency serving blind people must adopt strategies that will define the importance of specialized services or blind people will be very far behind, very quickly. Perhaps this is an area that the World Blind Union ought to look harder at. We have tended to see the WBU as an agent of change in the Third World. Perhaps we need to see it also as a promoter of specialized needs and services throughout the world.
There are some consequences of the different service delivery models in Australia and the United States. In America, there is less room for the consumer organizations than there is in Australia. Our place is somewhat circumscribed by the fact that there are so many national organizations of professionals.
Recently, we have begun to build cooperation across these potential barriers which has led to an enrichment of both the consumer perspective and the professional value system. More and more the needs of blind people are being articulated with a united voice by consumer organizations and organizations representing professionals and agencies. In these times, that's valuable. I think it would be accurate to say, though, that consumer organizations are still one of several voices that are being heard at the national level and there is a constant need to work to ensure that all of these interests are singing from the same songbook and are harmonizing!
In Australia there is a vacuum at the national level which NFBCA has begun to fill. This creates unique responsibilities and unique opportunities that few other countries have had. I am not at all sure that either the NFB or the ACB could have sponsored a conference such as the one that preceded your 1997 convention and had the kind of attendance you managed to achieve. There are already professional organizations in this country that would have held such conferences. We are constantly working to bridge the gap between professionals and consumers and the existence of so many professional organizations at the national level does not make it easy. In addition to those I have already described, there's a national organization of state government agency directors. There's a national organization of private agency directors. There's a national organization of directors of blindness agencies engaged in industry. The list goes on and on. There are at least two competing organizations of parents of blind children. Out of diversity comes uncertainty.
In a very real sense, NFBCA is the only national force that can and does transcend state boundaries in Australia. Organizations like the Round Table are certainly valuable and other groups that have come together to build more cooperation among agencies serving blind people in Australia are unquestionably worthwhile; but, compared to the stature that NFBCA has already managed to achieve in its relatively short life, these efforts are lilliputian.
There are so many wonderful things happening in Australia which NFBCA is taking the lead in promoting. We do not have a simple means of identifying paper money here. We have not done as good a job of co-opting the telecommunications industry as you have. We certainly have a lot to learn from your approach which has allowed you to leverage government funds at the state and Federal levels in ways that consumer organizations here have seldom managed to do.
You are perceived by state and federal officials alike as the organization that must be consulted when issues that relate to blind people are being discussed. This is a phenomenal accomplishment of which you should be very proud! Before you came along, agencies spoke for people who are blind. The fact that you have turned this around in 22 short years is a testament to your strength as an organization and to your effectiveness as a group.
What you have sought to do and what the Round Table and other such gatherings have begun to promote is the development of standards that transcend states and apply to people who are blind all over Australia. The success of all these efforts is due in large measure to the strength you have brought to the table.
Is everything sweetness and light? I don't think so. Any system that fragments services as Australia does has problems. Some agencies are just better than others and some agencies may well be very bad.
Some agencies promote consumer involvement while others expect blind people to behave as they believe they should. There is also inevitably a tendency to duplicate services, as was certainly the case with library services in the past. Perhaps more significantly, there is a real problem providing services that, by their very nature, are expensive and have little return. I think this measure particularly applies to services to people who are deafblind. It may also have stifled the production of materials in braille in the past though technology has tended to make this less of a problem today. I think that fragmentation also leads to unnecessary and costly competition among agencies for the scarce dollars of donors on which most agencies must depend for much of their funding.
Having said all that, I truly believe that the National Federation of Blind Citizens of Australia is in a position to play the absolutely pivotal role in determining the future of services to blind people in Australia. There is a great deal I admire about what you do and how you do it. I applaud your democracy and openness to debate. I value your encouragement of younger people.
I admire your commitment to collaborative reform. I am truly impressed by your ability to develop and complete specific projects with clearly defined goals. And, of course, I absolutely approve of your efforts to build a strong and vibrant philosophy of what it is to be blind in Australia. Don't forget just how important this last point is! Essentially, for me, the role of a consumer organization at its very heart, is to help people who are blind become comfortable with their disability and in a very real sense to be proud of it. There are so many factors that lead people who are blind to be ashamed of themselves that the most important role a consumer organization can and must play is to convince blind people that it is more than just okay to be blind. It's really pretty neat.
In a very real sense, comparisons are odious! As an outsider, it
is egregious and obnoxious of me to dare to offer conjectures
about the relative merits of systems whose histories and
environments are so very different. I've done it anyway. I have
also built, I hope, a series of lasting friendships in Australia
that I will do my best to see do not disappear. We have much in
common. We have much to learn from each other! You have much to
do and have done much. It was a true privilege to attend your
convention and to get to know so many of you while I was there.
I hope that many of you will find it possible to come to our
convention in 1999 when it is in Los Angeles. I will be working
to invite your President to be our guest here that year. What
we will never have in this country and what I will miss as long
as I am away from Australia are cricket and really good beer!
They have little to do with blindness but a lot to do with making
Australia and Australians what they are! Thank you for the
opportunity this article has given me to reflect on what I
learned about my country as well as about Australia. I am very
proud to be associated with an organization such as NFBCA and may
you grow from strength to strength.
In 1997 I was privileged to be granted a Churchill Fellowship. The purpose of these fellowships is to provide the means for people working in a particular field in Australia to study further in that field overseas where there is no more training available to them in our country. My fellowship was to enable me to learn more about deafblindness, its causes and implications, assessment and rehabilitation.
My time away was divided into three sectors. Firstly, I travelled around the U.S.A. with a colleague, Janne Bidenko, from the Office of the Public Guardian in Sydney. Janne is a founding member of the Deafblind Association in New South Wales. We spent three weeks travelling to many different states and to Toronto, Canada, looking at different agencies and services provided to deafblind people. It seemed to work out well that we had a brief look at all types of services, for all ages, and of course with varying degrees of excellence. Most agencies were so involved in their own service that they knew little or nothing about other services around the country. This was probably counter-productive, as many services are duplicated or the deafblind individuals miss out on certain activities because no one has given them information about their options.
In San Francisco, our first stop, we visited a DeafBlind children's support service, which observes and recommends programs for children integrated into regular schools. A family support worker will also work with the parents and family. The education specialist explained that he visits the classroom observing the progress of the deafblind child and then works with the teacher and special assistant to ensure the smooth progress of the program. If some children offer extra difficult challenges, the service may request extra expertise from the Perkins School, which also has a deafblind program.
Next stop was Seattle, Washington, somewhat of a Mecca for blind and vision impaired people and particularly for deafblind people because of its excellent services. We met there with Dorothy Walt, the Helen Keller National Centre's regional representative. Dorothy is deafblind, having Usher's Syndrome Type 1, and is the first deafblind person to work as a regional representative. Her job is to respond to requests for assistance from prospective students of the Centre, and to assess their needs and follow up their opportunities for work on their return from rehabilitation at the Centre.
Dorothy introduced us to the DeafBlind Service Centre, which acts as a case management/referral point for people who are deafblind. This service provides Special Support Providers to people who are deafblind for four hours a week, to assist them with participation in community life ( shopping, banking, appointments, courses, and so on). These are mainly volunteers, who are provided with a short training course before commencing work.
One quite remarkable service in place in Seattle is the taming of bus drivers. Cards numbered in large print and braille or tactile lettering (in different colours for blind and deafblind people) are held up to flag a particular bus. For a blind person, the driver stops, announces the number of the bus and if required assists the person to board the bus and take a seat. For a deafblind person, the driver gets off the bus, allows the person to be guided onto the bus and to a seat, finds out the required destination and then indicates the correct stop by a tap on the passenger's arm.
That night we enjoyed a meal at the Ragin Cajun restaurant. Danny Del Cambre, the restaurateur, is deafblind. Menus are in braille and large print, waiters must be able to sign and often are deaf. Danny himself cooks in sight of his patrons and the food is excellent. The other string to his bow is public speaking. He is regularly hired for the motivational circuit, using sign language with his wife as his interpreter. He was very inspiring.
Next we travelled to Toronto, where we visited the Rotary Cheshire Apartments, a wonderful example of equity for people who are deafblind. These are 16 purpose-built apartments, enabling people who are deafblind to live independently with the services they require. The entrance to the building displays a telebraille which is used as an intercom to contact the person you wish to visit. All tenants are supplied with a telebraille or a large visual display TTY depending on their method of reading. The foyer has a vibrating lounge plus a flashing light to indicate the presence of someone at the door. Appliances, doors and lifts are all marked in alternative formats. In the basement there is a common area which can be used by outside groups, equipped with a computer set-up which would make any of us envious - 80 cell braille display, large print, CD ROM, modem and internet connection, printer, embosser and scanner. Any tenant may use the computing facilities, as well as the exercise equipment which is also provided. And there are services to match these excellent facilities. Each tenant is entitled to 28 hours per week with an intervenor (the Canadian term for a special support provider), to attend whatever they wish in the community. One intervenor is on duty at all times. The daily weather forecast, news headlines and sports results are posted each morning in several formats, and tenants may then ask for details of anything from the newspapers. A dream for the future, but hopefully in my lifetime!
The George Brown College runs a two-year government-funded course in Intervention. Intervention provides guiding, interpreting, etc for people who are deafblind. As part of the course, students are required to do a practicum in the field - one semester with a congenitally deafblind person, one with an adventitiously deafblind person, and one of their choice. Subjects studied include causes of deafblindness, communication methods used by deafblind people, guiding, braille, etc. I don't believe the Canadians got these facilities and services without a struggle, but it's wonderful to see the fruits of their labours now.
Congenitally deafblind people, often with multiple disabilities, require higher levels of support and care. And they get them! We visited the Independent Living Service - a group of six separate group homes in Toronto. Each home has three residents, with three intervenors working in the morning, two intervenors in the afternoon, and one intervenor on duty all night. The intervenors rotate their shifts so that the residents will always be familiar with the person on duty at night. Community activities such as swimming, shopping, dancing and skating are enjoyed by the residents. For this group, however, their diary may consist of a stacker with relevant objects to symbolise the day's activities. Some of the residents have some sign language or speech, but the majority work with objects or pictures or some other kind of representation.
We also paid an interesting visit to CNIB (Canadian National Institute for the Blind), which provides literacy training, public awareness training, and more intervention programs to people with deafblindness wishing to access CNIB services. The day we visited happened to be Open Day for CNIB so we were able to move around and talk to many different people, although unfortunately not the new President of the World Blind Union, Euclid Herie, as he was elsewhere on that day. The CNIB physical facilities seemed crowded: teaching was being conducted in little more than a corridor width with the student, teacher and intervenor all crowded in.
Although the facilities we encountered in Toronto were truly spectacular, we were told that they are somewhat confined to Ottawa. Other states of Canada are apparently not so richly resourced.
After Toronto it was back to the United States and to Springfield, Illinois, where Kathryn Raistrick was our host. Kathryn visited Australia three years prior to our visit and conducted two days of seminars on deafblindness at RBS, Sydney. In Springfield we heard more about the government side of rehabilitation and how it approves and funds rehabilitation programs either by setting up centres or by outsourcing, as mostly seems to be done for people who are deafblind. The blindness service, deafness service and deafblindness service are all administered from the same office building. Not a bad idea!
From Springfield we went on to Washington D.C., where we met with deafblind individuals rather than services. Most of those we met were either working in highly productive positions or working with one or other association for deafblind people. We also visited Gallaudet University, which was set up particularly for deaf people. 60% of the students at Gallaudet are deaf, and the remainder have an interest in working in the areas of deaf education or welfare. All lectures and tutorials are conducted in sign language and speech, making it compulsory for lecturers to learn to sign. I believe there were about five deafblind people studying there at the time of our visit. We didn't meet any of them but I later met some students at Helen Keller National Centre who will by now be at Gallaudet. I understand that it is difficult for deafblind students needing braille and orientation and mobility support to attend Gallaudet, as there simply aren't the support networks available.
From there to Boston -- to visit Perkins School. Wow, what an unexpected feeling of awe grabbed me as I stood in the hallowed halls of the old school. As with most institutions now, Perkins only runs programs for children with multiple handicaps and so the hall was somewhat deserted. But I suddenly felt the spirits of the place move in and surround me. All those students who made a name and an impact on the world. Bob Smithdas, who I was yet to meet in New York, Helen Keller herself, of course, Tom Sullivan and many others we have all read about over the years. And the old, unique, everlasting, indestructible Perkins Brailler -- all came from this centre of excellence. No wonder I stopped in my tracks.
A trip to the National Braille Press, grabbing books off the shelf, amazing, and a visit to the Masters program at Boston College completed the travel part of my trip. At Boston College, the computer scientists were working with a young man with cerebral palsy. The only part of his body which Michael could move was his eyes, and he used his focus to move the cursor on his computer screen. The teacher asked Michael to move the cursor to the verb in the sentence on the screen. He did it! Dr Frank Curren informed us that he got the idea of using this method after reading the book "Annie's Coming Out", an Australian book about a Melbourne woman with incredible intelligence but no way to express it. He also told us that the method has been used in court to provide evidence from people with severe disabilities in cases of alleged abuse, etc. Of course, the criticism is now being raised that the evidence is not fact and the method has been abandoned until further research is conducted.
This was just the first part of my incredible journey. You will
have to catch up with the rest of it at a later date.
My name is Douglas McGinn and I would like to take this opportunity to introduce myself. I am 32 years old and I live in Hobart, Tasmania.
I became legally blind as the result of a car accident in 1985. At that stage I was managing a Coles store and obviously needed to undergo an intensive rehabilitation process. This culminated in the successful completion of a Bachelor of Science Degree at the University of Tasmania.
Since 1991 I have worked as a Skillshare Trainer and as a Training and Support Officer within a disability-specific employment agency in Melbourne. Presently I am working as the Disabilities Adviser at the University of Tasmania in Hobart.
I have been involved with numerous disability organisations and Committees of Management, and was recently elected to the Board of Directors of the Royal Guide Dogs Association of Tasmania. For two years previously, I was chair-person of the Committee of Management of the Victorian-based Senswide which is a specialist employment and resource agency for job-seekers who have a sensory loss.
I certainly understand the commitment shown by NFBCA Council
members in previous years, as indicated by the work that has been
undertaken and completed. I look forward to working for you on
the Council and although I am relatively young I look forward to
learning from many other people throughout the organisation.
As I look back over the year, I realise that there have been a number of developments in this area, not the least of which is a change to the portfolio name. You will recall that the membership responsibilities have previously been referred to as membership and development. However, in planning for the coming year, Council decided at its first meeting after Convention that this portfolio would be known as "membership and communication" and the portfolio for which John Simpson has responsibility would be known as "planning and development". In doing this, Council recognised that the two areas are closely linked and may overlap from time to time.
Branch Development Seminar:
In March of this year, a branch development seminar was held in Melbourne. Representatives from branches were invited to come together to talk about how NFBCA is functioning as a national organisation and how branches are linking with the national body as well as with local members and their local community at large. It was a very successful weekend and many energetic and innovative ideas were discussed. The major outcome of this seminar was the formation of a working party to put together a discussion paper about the future structure and functioning of NFBCA. At this point, the focus of work in this area fell under the guidance of the Vice President Planning and Development and we look forward to considering the discussion paper during 1998.
Visits to Branches:
I would like to take this opportunity to thank Joan Ledermann for her support in this area. Joan has made frequent visits to the Illawarra branch during the past few months and has been able to assist them through some challenging times. In addition, I have visited the Tweed Valley branch for their International White Cane Day luncheon. Ian Harrison organised a very pleasant function and congratulations to Ian and his helpers for their efforts. It was great to meet so many new people who take every opportunity to come together for social interaction and as a small lobby group to work for change in the Tweed Valley area.
I have also been fortunate to be able to visit the Macleay/Nambucca branch. Richard Mackay does a superb job for this branch. There were approximately 25 people at that meeting. It was fabulous to hear of the breadth of the group's involvement in their local area, including access committees in Kempsey and in South West Rocks and the regional Home and Community Care (HACC) committee. They are currently raising money to assist a member of their branch to attend Convention 1998. They are a very energetic branch with a strong commitment to further the work of NFBCA in their area.
Communication:
This year has also seen the development of a new membership brochure. I would like to thank NFBCA staff for their assistance in this endeavour and I urge everyone to obtain some of these new brochures and to talk to your blind and vision impaired friends about joining NFBCA.
Blind Citizens News continues to be produced and I would like to welcome Lynne Davis as the new editor. It is also important to remember that members can now receive Blind Citizens News by e-mail and that if you wish to do so, please contact Cheryl or Sandra in the office.
Those of you who regularly listen to the NFBCA radio program will have noticed that during 1997, the program adopted new theme music and a new name - "Horizons". In August, the 700th edition of the program was produced and Council members and friends joined with Neville Kerr and his wife to celebrate this important achievement. Congratulations Neville and thank you Trish for your support. It is also with much pleasure that I report that each state now has a SoundAbout audio magazine with Queensland and South Australia each having produced their first Soundabout tape in the latter part of the year. Council is pleased with this initiative and one of my responsibilities in the coming year is to co-ordinate the further development of Soundabout as an important communication strategy.
I wish all members a healthy and happy 1998. I am looking forward to a short break in preparation for another busy year.
In the last 12 months, Community Access work has focused on the development of DDA Standards, and continued implementation of our transport and pedestrian access policy statements. Many NFBCA members have contributed to this work. The highlights for the year have been:
The past year has been busy and, for me, not entirely related to my identified portfolio "Disability Services".
In February this year, I attended a meeting of the Australian Blindness Forum (ABF), held in Sydney at the offices of the Royal Blind Society (RBS). It was a first for me and some of the positive outcomes were pleasing. RBS had just finalised their report "When Even Glasses Don't Help" and the findings of the report directed some of the discussion. Of particular note, both in the RBS report and in ensuing discussions, was the strong emphasis on the need for older Australians to manage vision loss in a more productive manner.
Following that meeting, NFBCA has participated in discussions aimed at ensuring a greater commitment by government to a range of issues related to print disability and representation on an ACROD committee on Ageing. New arrangements, where all Council members will take on responsibility for a particular portfolio, have also targeted age-related vision loss for work during the coming year. NFBCA has joined with a growing group of service providers and community groups who will work towards making 1999, the International Year of Aged Persons, a memorable event.
Discussion at the ABF meeting strengthened my belief that we all need to work to ensure that services funded through the Home and Community Care (HACC) Program meet the needs of people who are blind or vision impaired, especially those experiencing late onset blindness. Information from service forums in NSW, ACT, Victoria and Tasmania shows that we are low on the priority list for such services. As a consequence, I have written and circulated a detailed report giving background information about the HACC Program and setting out some recommendations that Branches may care to follow.
I represent NFBCA on both the building access policy and technical advisory committees of the Australian Building Codes Board (ABCB). Throughout the past two years, the ABCB has been considering and drafting changes to the access provisions, for people with a disability, that are included in the Building Code of Australia (BCA) and its accompanying Standards. Barry Chapman has also been involved in these committees from time to time and has been instrumental in identifying needed changes to the Lift Code. The new BCA comes into effect this year, following amendments made at the Variations Conference in December. We hope that an ongoing consultative process with representatives of the disability field will ensure further change. There remain some discrepancies that have yet to be addressed and resolved. The BCA is not a static document and changes can be made every six months.
NFBCA is a member of the Consumer Health Forum. Our members have been included in consultations to do with the safe use of medication. Progress is slow but, in the long run, I am sure that ways of providing information about and identification of medicines in an appropriate format will eventuate. A most productive focus group, with the Young Pharmacists Association of Victoria, was held at the National Office early in the year. Members of this organisation are attempting to make their places of business more accessible as well as working on strategies to ensure the safe use of medicines for their clients.
One of the highlights of the year was the pre-Convention seminar "Horizons 97". We heard of valuable new services being initiated by service agencies to assist their clients and were able to discuss, face to face, issues of concern for all people who are blind or vision impaired.
Workshops held during the Convention highlighted growing awareness of the differing needs of people experiencing vision loss and, in particular, raised questions about how we can ensure that the general public has a better understanding of these issues. I have had some interesting responses to an article in the last edition of NFBCA News and thank those who made suggestions that will be followed up.
NFBCA has followed, with interest and participation, deliberations regarding the new Commonwealth/State Disability Agreement (CSDA). As you will know, the CSDA determines the level of funding provided for disability services, with the exception of employment. Ministers have made a commitment to finalise a workable agreement on the new CSDA by early 1998.
It has also been agreed to release a report by the Australian Institute of Health and Welfare, which deals with unmet need and population growth.
As you will know, I am involved with initiating ways in which women in our region of the World Blind Union (the East Asia Pacific Region) can improve their status by working together. Women from most countries in our region have responded to an introductory letter and questionnaire and are now in receipt of our first newsletter. On my visit to Vietnam in late November I met with representatives from Korea, where the next Regional meeting will be held in June, 1998. The meeting will be preceded by a three day Women's Conference and at that time a committee will be elected to serve the interests of women in the region. I hope that as many women as possible will attend from Australia.
I look forward to working more intensively over the coming year
on issues related to ageing and vision loss in combination with
Leighton Boyd. With Joan Ledermann, I will work on strategies
to ensure that we receive the services that are appropriate to
our needs.
As this is my first report, I would like to take the opportunity to explain which groups can become Organisational Members, and my role as their representative on Council. I will also give you an indication of some of the issues raised by Organisational Members since Convention 97.
There are three types of NFBCA Organisational Members:
A formal position description for the Organisational Members representative on Council was written, and adopted, during the previous Council term. The representative is elected at the NFBCA Convention for a term of one year, and must have been nominated previously as the voting delegate for one of the Organisational Members.
Some of the duties and responsibilities of the Representative are: to be a Director of the NFBCA, to attend and actively participate in Council meetings, to participate in working parties and committees, to liaise with organisational members, to encourage eligible organisations to join NFBCA, and to provide support to the Vice President (Membership and Communication).
I have been undertaking these duties by: contacting each member group by phone, or in person, raising issues with Council, ascertaining what action is to take place, and reporting back to the member group which raised the issue.
Some of the issues which have been brought forward since the Convention in June have been:
The Council would also like to encourage other eligible
organisations to join NFBCA as Organisational Members. So, if
you would like to discuss how you can join or you wish to raise
any other issue, please do not hesitate to contact me at home by
telephone on 03-9434-3832,
by fax on 03-9432-3447,
by email on boyd_family@msn.com, or through the NFBCA Office.
The 1997 Talking Book Awards were presented at a ceremony at
Royal Blind Society, Sydney, on November 20. The winner of the
Adult Category award was "Oyster", written by Janet Turner
Hospital and narrated by Jenny Vuletic. The award for the Young
People's Category was won by "Boyz 'R' Us", written by 23 year
old first-time author Scott Monk and narrated by Nicholas
Opolski. Each author and narrator received a $2000 cash prize.
The awards are open to books by Australian authors and books with
an Australian theme.
On the first week-end in October I had the pleasure of representing NFBCA at the conference of the New Zealand Association of the Blind and Partially Blind in Christchurch. NZABPB is the consumer organisation of blind and vision impaired people in New Zealand, and in talking about the conference I will try to make comparisons with the structure and work of NFBCA.
NZABPB is an organisation with a number of local branches. Each branch sends a delegate to the meeting and the delegates debate issues as directed by their branch. This is quite different from NFBCA where the individual is seen as the most important part and the power of the organisation. For NZABPB to enable branches to have substantial influence, all conference reports must be circulated at least a month in advance to give branches time to consider the issues. This means that, compared with NFBCA's convention, there is limited spontaneous debate on issues during the conference.
I noted that NZABPB was active in monitoring the activities of the New Zealand Foundation for the Blind, the major agency for service provision to blind and vision impaired New Zealanders. In contrast, NFBCA is less active due to the large number of blindness agencies in Australia. NFBCA, however, is very active in working within the community on pedestrian safety, transport, employment and education issues. NZABPB talked at the conference about increasing its profile as a lobby group within the community.
At the conference, it was resolved to change the name of the
organisation from New Zealand Association of the Blind and
Partially Blind to Association of Blind Citizens New Zealand (ABC
NZ). This year's conference was also significant in that Doug
Johnstone retired after six years as President of the
organisation. Jonathan Mosen was announced as the new President
and he took up his duties following the conference. I met many
interesting people during my visit and I thank them very much for
their hospitality. I was also impressed with the work of the
NZABPB.
As most readers will be aware, I am replacing Aileen McFadzean while she is on maternity leave. I have the difficult task of continuing Aileen's good work and there has been much to learn, but after seven months at NFBCA I feel that I have finally found my feet.
There are a couple of matters which are of particular importance and which I would like to discuss here.
Medical Reviews of Blind Pensioners
The first issue relates to the current medical reviews of Blind Pensioners. You may be aware that in the 1996-97 Budget the Government announced that customers receiving the blind pension would be reviewed to ensure that they continue to meet the criteria for "permanent blindness". The information we have received from Centrelink is that only blind pensioners who fall within the following categories will be asked to provide a report:
Based on the inquiries we have received to date, the two main problems encountered by people who have been asked to provide a report relate to the cost of the report and the timeframe in which to obtain a report.
In relation to the cost of the report, blind pensioners are advised on the audio tape that: "Time taken by your doctor to complete this report may be claimed under a Medicare item when included as part of a consultation". There must be a personal attendance on a medical practitioner for a consultation to be claimed. If you are required to provide a report you should make the following inquiry before you consult a specialist:
Blocking Calling Number Display
As you will be aware, Telstra has begun to introduce a calling number display service. The service displays the number of any incoming phone calls on a small screen. There are two ways of blocking the release of your phone number when you make a call. The first option is on a "call by call" basis, by dialling 1831 before the number you are calling. You can also arrange to block your number permanently, by calling 1800-35-37-39.
I hope this information has been useful. Please note that the
Advocacy Service is available to assist any blind or vision
impaired person who thinks he or she may have suffered
discrimination on the basis of their disability. I encourage you
to contact me at the national office if you have any queries.
Individuals and organisations are invited to participate in the Adelaide Disability Biennial, from May 1-10, 1998. This event will include a performing arts festival, three national conferences (on access, spirituality, and employment), an equipment exhibition and a number of seminars.
For information about the Biennial, contact
Ability Network, GPO Box 909, Adelaide 5001;
telephone 08-8377-2295;
fax 08-8296-1688;
email biennial@ability-network.com.au;
Web http://www.ability-network.com.au/biennial.
1997 was a year of some significant personal losses for me; so I was especially pleased and deeply honoured to receive the NFBCA David Blyth Award at the annual Convention in Adelaide. Since the early days of struggle for NFBCA in the 1970's I have held David in high esteem, and it is nice to have in my living room a plaque which bears both our names.
The citation for the award focusses on my involvement in the
development of retinitis pigmentosa (RP) groups in Australia.
There have been many people involved in these developments but
I want to especially acknowledge my most significant supporter - Meryl Bolin, my partner for over 40 years. Thankyou Meryl for
all your many contributions, and thankyou to NFBCA for this very
special award.
In November Sydney's Sun-Herald newspaper reported that a taxi driver had been fined $400 with $626 costs for refusing to carry Paralympic equestrian, Sue-Ellen Lovett, and her guide dog in his cab. Following his conviction, the driver's taxi licence was also being reviewed by the New South Wales Department of Transport.
Unfortunately, incidents such as the one which led to this driver's prosecution are common occurrences for guide dog users. Sue-Ellen Lovett's case is only one of numerous recent prosecutions in New South Wales.
The taxi complaints telephone number at the New South Wales
Department of Transport is 1800-648-478. Readers in other states
are advised to check whether their state department of transport
has a taxi complaints number - and use it!
The 1997 ARPA Congress, hosted by the Retinitis Pigmentosa Association of Queensland, attracted 140 participants including people with RP and associated conditions, their families and friends, ophthalmologists, optometrists and other health professionals.
ARPA-funded research scientists presented their findings for the year. Professor Jonathan Stone continues to follow a line of research related to maintaining the health of photoreceptors in the retina. Other researchers, such as Dr Michael Denton from New Zealand, have identified genes responsible for various types of RP that may, in time, respond to tissue transplantation or vitamin therapy.
Surprisingly, there were a number of intense discussions on the efficacy of using Vitamin A in Palmitate form to slow the effects of RP, as indicated in a clinical trial conducted in America. Although there were no convincing arguments that Vitamin A in the prescribed dosage is harmful, there were strong suggestions that the methodology used in the clinical trial was flawed and that consequently the results were perhaps invalid. It was suggested that only particular types of RP, those associated with problems related to the epithelial layer of the retina, would respond to Vitamin A therapy. Individuals who are using Vitamin A therapy or intending to do so, may wish to discuss the matter with their general practitioner or ophthalmologist.
One of the most interesting workshops was related to when to give up driving a car. There were some true horror stories from people who are still driving with very limited visual fields. Recommendations coming from this and other workshops will be included in the Congress report.
This year, ARPA has set aside $120,000 to provide researchers with seeding grants or ongoing funding. Applications are considered by ARPA delegates, based on the recommendations of their Grants Assessment Committee.
If you wish to obtain copies of Congress reports and
recommendations from workshops, contact your local RP group.
Material will be available in large print or on audio cassette.
The closing date for articles for the next edition of Blind
Citizens News is Friday, March 6, 1998. Articles should be sent
to Lynne Davis at the Blind Citizens Australia Office, in electronic form
(by email or on disk) or in print.
For the latest information from Blind Citizens Australia tune in to Horizons on your RPH station, on a Community Station near you, or (coming soon) over the Internet. Horizons is broadcast regularly on RPH stations. It is also becoming available on Community Stations, but you may need to contact your local station to ask it to receive Horizons over the Community Radio Satellite. Horizons will soon be available over the Internet, from our Web Page at http://www.bca.org.au. You will need a computer running under Windows 95 with a sound card and the Real Audio software.
HORIZONS BROADCAST SCHEDULE