Beacon The newsletter of the Australian DeafBlind Council No. 21 August 2002 In This Issue Page Page Forum Fallout 1 World Federation 14 President's Report 7 Important People 16 Touching the World 8 Coming Events 17 Unmet needs 10 Call for Contributors 19 Critical Issues 11 Government Replies to National Forum Issues Read 'em and Weep Beacon readers might recall that one of the most significant ADBC events last year was the National DeafBlind Forum. It was held at the Royal Blind Society (RBS) in Sydney in July 2001. The event was chaired by Michael Simpson, RBS Client Services Manager, with some 40 representatives of Deafblindness agencies and special interest groups, as well as Commonwealth and State public servants in attendance. The purpose of this major event was to prepare recommendations that would be brought to the attention of the National Disability Advisory Committee (NDAC) and through that Committee, brought to the table during negotiations over the Commonwealth-States Disability Agreement (CSDA). It was clear from discussions at the forum that no Australian state or territory is close to meeting the needs of its citizens who are deafblind. National and State policy and program implementation in all areas covered by the CSDA and in such areas as education, transport, health, or housing were reported as being shamefully inadequate As part of its advocacy program, ADBC President Irene McMinn promptly sent letters, together with a copy of the Forum report to Community Services Ministers in each State informing them of the National Forum outcomes and requesting their response to claims of inadequate service provision. Several responses have been received to date and excerpts from these follow: Western Australia The National Forum Report found: * Need to legislatively identify deafblindness as a specific disability. * Lack of consistency in respite services. * Lack of adequate individual supports based on individual needs. * Lack of adequate staff training across the sector. * Need for separate/specific advocacy service/focus * Need for an holistic approach to individuals Sheila M McHale MLA Minister for Disability Services Replied: The Western Australian Disability Services Act (1993) defines a disability as a condition which is attributable to an intellectual, psychiatric, cognitive, neurological, sensory or physical impairment or a combination of those impairments. While this definition does not specifically mention deafblindness it does not limit sensory disability to only vision or hearing impairment and specifically refers to a combination. I am aware that the Australian Bureau of Statistics does not include deafblindness and I am informed that the low incidence would make any figures obtained unreliable. However, the Commonwealth/State Disability Agreement Minimum Data Set collection which applies in all Australian jurisdictions and forms the basis for service planning, includes deafblindness as a primary disability. Your e-mail contained a summary of service issues relevant to each state. I believe that since the report was prepared there have been positive developments in Western Australia. You will be aware of the new agency, "Senses," created from the merger of The WA Deafblind Association and the Royal WA Institute for the Blind, with the goal of becoming a centre of excellence for people who have multisensory disability including deafblindness. The Western Australian Government has increased support to this organisation in a range of ways. New specialist early intervention and school age programs, with a focus on individual communication, have been funded and a new specialist respite service which has the capacity to ensure that carers have appropriate communication skills, have increased the range of supports available to children with deafblindness and their families. The Western Australian Government has a strong commitment to partnership and greatly appreciates the valuable role of the Senses' Deafblind Specialist Services in working with other organisations to increase awareness of the particular needs of people with deafblindness and improve carer skills. It is through such collaboration that a wider range of opportunities for participation in community life can be provided. It is important I am kept informed by consumer organisations such as the Australian Deafblind Council. Thank you for providing me with a comprehensive overview of the service gaps for people deafblindness. Yours sincerely Queensland The National Forum Report found: * Need for one on one support services. * Need for separate/specific advocacy service/focus * Lack of resources for ongoing staff training in the sector * Needs to be recognized as a unique disability. * Lack of flexible and appropriate respite and accommodation programs. * Inadequate quality services around therapy and interpreting. * Deafblind population dispersed across the state. Judy Spence MP, Minister for Disability Services Replied: Negotiations are also still occurring regarding the availability of Commonwealth funding under the CSTDA. The 2002/2003 Federal Budget was announced on 14 May 2002 which included funding of $547.5 million over five years to the States to respond to the unmet needs of people with a disability and their families. While this is being presented as new money, it equates to existing funding for unmet need, which has already been committed to Queenslanders on support packages, to families and individuals. The Commonwealth has also placed a number of conditions on States receiving this funding, including the requirement that proposed reforms to disability support pensions are passed by the Senate. As such, the Federal Budget announcement has done little to reassure Queenslanders with a disability and their families about the Commonwealth Governments commitment to continuing to work to meet the needs of people with a disability and their families. The Queensland Government will continue to negotiate with the Commonwealth to try to secure a better deal for Queenslanders with a disability and their families. I would also encourage your organisation to write directly to the Commonwealth Government identifying your concerns for people who are deafblind. Decisions on the level of funding to be allocated by the Queensland Government during 2002-2003 will be dependent on the announcement of the State Budget. Once the funding is determined, I would encourage your organisation and other deafblind associations to apply for funding in the context of future funding rounds for disability services. New South Wales The National Forum Report found: Deafblindness not recognized as a separate and unique disability. * Services are fragmented, non systemic and uncoordinated. * No central point of contact re deafblindness and services. * No coordinated assessment and referral process * No programming with an emphasis on communication * Need for individual and systemic advocacy focus * Residential care sparse, isolating, poorly funded and generally inappropriate. * No suitable individually focussed and specific respite services. * Lack of ongoing training for staff, families and advocates. * Lack of information re deafblindness available to the community. * No interdepartmental approach. Faye Lo Po' MP, Minister for Disability Services replied: Firstly, I would like to assure you that I recognise the unique needs of deafblind people. As noted in my prior correspondence to you dated 17 February 2002, there are a number of deafblind specific services currently funded by DADHC. I am aware however that many of the mainstream disability services currently funded by DADHC are not easily accessible by people who are deafblind. I note that the issue of recognition of deafblind as a discrete disability was discussed in my correspondence to you on 17th February this year. In NSW deafblindness is recognised as a distinct disability group. In addition, the Minimum Data Set (MDS) for the Commonwealth State Disability Agreement (CSDA) has a separate data category for deafblindness, which is recognised by all jurisdictions including NSW. With regard to your concerns about the recognition of deafblindness as a discrete disability specifically within the Commonwealth State Disability Agreement, you should note that disability type is not specified within the agreement. DADHC faces a number of difficulties when planning for the service needs of deafblind people. These include the lack of adequate statistical data about the number and location of deafblind people in NSW and knowledge about the most appropriate method of providing services that can be accessed by this relatively small group of people who are spread across the State. Furthermore, although the CSDA MDS provides 'snapshot' data on the number of deafblind people who accessed disability support services on a specific day, this information does not show the numbers or the needs of those people who are deafblind and do not access services. In my previous correspondence to you I suggested that you meet with DADHC planning officers with a view to connecting the DeafBlind Association with the Department's planning and funding processes. I have been advised that DADHC officers, Mr Julian Cornelius and Ms Karen Turvey, from the Department's Planning Team met with you in May this year. I understand that at this meeting you highlighted the range of issues facing deafblind people, such as communication problems, isolation and difficulty in accessing services that were appropriate for deafblind people. I also understand that it was agreed that the DeafBlind Association would forward a document to the Planning Team consolidating the issues highlighted at the meeting and provide realistic proposals for increasing access to mainstream services by deafblind people. I suggest that the most appropriate method of ensuring that the issues facing people who are deafblind are included in the DADHC planning process would be to provide consolidated information to the DADHC Planning Team on an annual basis. This information could then be fed directly into the DADHC annual service planning process. The DADHC Planning Team can provide advice about the timeframe of the annual planning process. As the numbers of deafblind people are relatively small and yet are spread across NSW, DADHC needs to draw upon your expertise to identify feasible and efficient methods of improving their access to mainstream services. We would be particularly interested in hearing about proposals for tailoring existing services to better meet the needs of deafblind people. Thank you for bringing your concerns to my attention. South Australia The National Forum Report found: * Lack of clarity of potential consumer numbers, and reluctance to create services because of this. * People isolated in inappropriate services (especially accommodation). * Concern that some consumers may have some disability (i.e. intellectual) needs met, but not all (i.e. deafblindness). * Lack of skilled/trained supported to access community activities. * Lack of employment training/support programs for people who are deafblind and have high training needs, e.g. pre vocational experimentation, full time interpreters, etc. * Lack of long-term post placement support if people placed in employment. * Lack of: o skilled individual advocates o skilled group/systems advocates * Absence of any organized consumer group for advise, etc. Hon Stephanie Key, Minister for Social Justice (responsible for Community and Disability Services and the Ageing) replied In South Australia, deafblindness is a disability that has received significant attention over a number of years. I understand that while all people who are deafblind have some needs similar to those of people with a single sensory disability, they also have needs which are different. Many of these are related to the complex interrelationship of hearing and vision loss, while others are related to the very low incidence of deafblindness itself. In general, sensory agencies in SA develop specific responses to each individual's needs, in order to focus on the broad range of issues affecting each person. These would include the range of sensory disabilities, including deafblindness, as well as other issues such as communication, isolation, mobility, and social skills. By tailoring responses to individual needs, it is ensured that each person receives an appropriate response regardless of their specific condition. I have been advised that there are several programs in South Australia specifically for people who are deafblind, such as: Oral/Aural Communication skills training, provided by Hearing Solutions, specifically for people who are deafblind and able to communicate orally. Mentor and peer development for children and adolescents, are conducted by Sensory Options Coordination, under the Successful Adults in Life (SAIL) program. This is specifically for young people who are deafblind regardless of the degree or communication style, to develop confidence and independence. Discrete brokerage funding is available through Sensory Options Coordination to help individuals to remain independent in the community. This funding was established in 1995 to replace the Visual and Hearing Impaired service. The development of an accommodation program for people with combined sensory disability and intellectual disability. Two of the four current clients of this program are deafblind. Independent living skills program, run by the Royal Deaf Society specifically for people who use Auslan/sign language and are deafblind. A significant amount of work is currently being undertaken by the Department of Human Services and Sensory Disability Service Providers Forum to identify issues concerning deafblindness services in South Australia and to recommend ways forward. The Sensory Forum has developed a sector-wide position paper on deafblindness. To assist with this, the sector has recently agreed upon a working definition of deafblindness. A survey was also conducted within the sector to identify people who fall within the definition, and to assess what service providers currently provide for this group and identify service gaps for people who are deafblind. The position paper will form the basis of the Department of Human Services' policy direction on deafblindness. The Manager of Sensory Options Coordination made a study tour of several European countries in 2000 to identify the services provided to people who are deafblind and to make recommendations for future service development in South Australia. Consumers are involved in planning of services within Sensory Options Coordination in the following ways: Specific support plans are drawn up in consultation with individual consumers. They are actively involved in the planning and development of their own services. As new services are planned or begin (for example, accommodation project, SAIL project) they have sought to establish advisory groups involving consumers. In addition the assessment process conducted by Options Coordination of people who are deafblind is based on client functional needs. These assessments are conducted by staff who have the required skills and experience and are aimed at assisting people to obtain appropriate supports. Given the individual needs of those with deafblindness, the position paper Developed by the Sensory Forum concluded that there is no need for the development of a stand-alone deafblind service. Existing sensory providers are capable of meeting the needs of people who are deafblind. In addition there is already funding allocated for several programs which acknowledge deafblindness as a discrete disability. Yours sincerely Thousand dollar questions for Beacon readers Are you reassured that something will be done to remedy the glaring deficiencies reported at the National Forum? If you were deafblind, or had a family member who was deafblind, based on these replies, which Australian State would give you the most hope of receiving the support you need? Or would you choose to move to another country, perhaps Sweden, Denmark or Finland, where specific service entitlements for citizens who are deafblind are guaranteed by law? PRESIDENT'S REPORT 2001-2002 (Irene McMinn) I wish I had some really good news to bring you in the way of Government Funding or great results coming from the DeafBlind Forum held in Sydney last year But I don't. ADBC is still working without government funding of any kind. When it comes to services, people who are deafblind are still the forgotten group of people. However we are still plugging away trying to find what is the best way to do our work and draw people's attention to the need for people who are deafblind to have proper services and supports designed especially for them. At the moment we are trying to decide what is the best way to go wether to join with an existing funded organisation, for example, BCA or Deafness Forum. The problem is will they really understand the needs of people who are deafblind or not. However the picture is not all gloomy we are still working on the different issues we have on our agenda. ADBC went through a difficult time after Bob's retirement. It was extremely difficult to get our teleconferences happening and we still had the problem of no funding for interpreters for committee members. I was always very lucky in this respect as Trish James was mostly there to type for me, and when she was not available Janne Bidenko would come and do it. On behalf of Committee Members I would like to sincerely thank these two ladies for the hours they gave free of charge to ADBC in this respect. However others were not so lucky and we held one meeting with both Michelle and Sven using the NRS. That slowed the meeting considerably As I was lucky enough to get a computer last August once again thanks to Trish and a few other people who set up for me. Michelle was able to set up an email group and we have all our meetings on email, which has solved the interpreter problem and saved ADBC a lot of money in tele-conferences. Earlier this year we were glad to welcome Bob back as Administration Officer and he is keeping our noses on the job in hand. ADBC has sent out letters to the relevant State Ministers asking what is being done to meet the gaps in services that were identified during the National Forum. We have received replies from four State Ministers but no promises of funding as yet. We are also worried about people who are deafblind in States and Territories were there are no service providers at all. In some cases there are not even any known numbers of people who are deafblind. Yet we are sure that they exist. How they survive is an other question. As people who are deafblind we all need to lobby our politicians until they realise their responsibility to provide services for us. We must work as a community to show not only that we exist but that we are not going to shut up until they give us the support we need. It is up to us as deafblind people to raise awareness of our situation and show people that with the right kind of support we can live productive and useful lives. ADBC is behind us in our battle and will support us until our voice is heard. ADBC News Office-bearers for 2002-3 The new ADBC committee consists of Irene McMinn, Sven Topp and Di Hartman representing people with deafblindness, parent representative Carolyn Ferguson and three other members - Mike Steer, Sharon Barrey Grassick and Meryle Trentini. The committee has re-elected Irene McMinn as President, with Sven Topp as Vice-President, Sharon Barrey Grassick as Secretary and Meryle Trentini as Treasurer. John Finch and Michelle Stevens did not renominate for places on the committee and were thanked for their contribution to ADBC. A presentation was made to John Finch in recognition of his years of service on the ADBC committee and his part in the establishment of the Council. TOUCHING THE WORLD 6TH NATIONAL DEAFBLIND CONFERENCE 12th to 15th JULY 2002. (Janne Bidenko & Stephen Hallinan) The 6th National DeafBlind Conference was held at Lidcombe, Sydney and feedback indicates that it was enjoyed, and found by most delegates to be informative. A satisfying aspect of the conference was the high level of participation by people who are deafblind (both in numbers and involvement in discussion). There were delegates from all Australian States (except N.T.). A contingent of eight people from New Zealand attended, as well as presenters from Japan and the USA. It was also pleasing to see delegates from NSW Department of Ageing, Disability and Home Care (both management and community workers). There were 226 participants at the conference, with the 30 presenters and exhibitors giving a wide range of pertinent and informative presentations. Many delegates took the opportunity to renew old friendships and establish new contacts, especially during the conference dinner and Sunday social activities. Some 31 of the delegates were deafblind. Another seven were deaf and six were blind. There were 35 interpreters and 40 volunteers supporting delegates. Two volunteer bus drivers made sure delegates were safely delivered from the airport, to and from their accommodation and the conference, as well as ensuring that delegates met their flights home. Muscular relief was provided for delegates, by four volunteer massage therapists and for those who needed child minding support there was a volunteer childcare worker. New Zealand is now a member of the Australian DeafBlind Council following its Annual General Meeting, which was held during the conference. There was also a great deal of input and discussion at the AGM by delegates who are deafblind and their families. ADBC is now becoming a genuine vehicle for the discussion and debate of deafblindness issues by people who are deafblind, their families and friends, service providers and professionals. The Australian Commissioner for Human Rights, Dr Sev Ozdowski opened the conference by drawing attention to the rights of people who are deafblind and the current discrepancy in services and funding for people who are deafblind. This was followed by the keynote address from Mr Shin-Ichiro Kadokawa from Japan (himself deafblind) speaking of his battle for education and the work he now does in Osaka to (a) improve conditions for people who are deafblind and (b) to promote peer support by people who are deafblind in Japan. The five speakers from the United States (including Dr June Downing who was also conducting the Renwick College Winter School on Multiple Disabilities) spoke on a variety of issues. These included Education, CHARGE Syndrome, the important factors in interpreting for people who are deafblind, the function of communication in behavioural problems and the role of grandparents in developing communication. Local and Interstate speakers also addressed areas of education, interpreting, rights, networking, mentoring, personal & community participation, sensory problems in aboriginal communities, medical issues and technology. The DeafBlind Association (NSW) appreciates the tremendous support and practical assistance given by Major Sponsors - Royal Blind Society of NSW, Telstra, ACE, The Royal Institute for Deaf & Blind Children and Guide Dog Association of NSW & ACT. We also wish to acknowledge the donations and fund-raising efforts of supportive individuals and organizations. The conference "bulged at the seams", and the range of topics covered meant that sessions were long and delegates often had to make a choice between two sessions they would like to attend. With the sheer volume of information to be presented, it was difficult for interpreters and deafblind delegates to keep up with presenters. But despite these shortcomings, the general consensus from delegates was that the information gain, the networking and social interaction all helped to make a successful conference experience. The success of the conference was due to the involvement and interest of every single person who attended - it is people who make an event such as this worthwhile. A heartfelt thank you from Sydney to each person who attended the conference and to all that have helped and encouraged us along the way. Conference Merchandise and Proceedings Following the 6th National DeafBlind Conference in Sydney, a number of items of merchandise as well as proceedings from the conference are available for sale, If you have not yet ordered a copy of the proceedings of the conference (on computer CD) and would like to do so, the cost is $20 and you can order by telephoning Janne Bidenko on (02) 9456-2372 (voice) or email her at dbconference@gpo.com.au We also have long-sleeve T-shirts for sale at $22 each and short-sleeve T-shirts available for $16 each. Both have the conference logo on the front and fingerspelling and Braille alphabets on the back (dark blue with yellow printing). Caps with "touch" in Braille on the front and yellow conference logo are available for $15. Additional conference bags are available for$12 each. Postage on items is $4. Deafblind Email Forum Hello dbies, Many dbies who were at the DeafBlind conference in Sydney recently, will already know that many issues regarding deafblind people were talked about, especially at the Annual General Meeting. ADBC would like to encourage more discussion about these issues. We thought the DBAust email list is a good place to continue this discussion, as it allows everyone to think about what they want to say before they put it in writing. It will be interesting to hear everyone's opinion, whether it be positive or negative. It would also be good if the issues we debate are issues that concern dbies and their daily lives : accommodation, communication which includes interpreting issues, employment, support workers, transport access and availability to adaptive technology like computers and tele-braillers. Do you want to talk about an issue that is not listed here? Please feel free to write your views about deafblind issues. Sighted and hearing people have a saying "Stand up and be counted" which means, "Don't let other people speak for you when you can do it yourself". So let's all "STAND UP AND BE COUNTED." If you are not on the DBAust list and you would like to join, send me an email at: dijon@alphalink.com.au Regards, Di Hartman UNMET NEEDS IN DISABILITY SERVICES (Margaret Verick) The Australian Institute of Health and Welfare (AIHW) reports that a total of $519 million in extra Commonwealth and State/Territory funding for unmet needs in disability services over 2000-01 and 2001-02 is proving effective. AIHW carried out a study for the National Disability Administrators to examine the effects of new funding and to estimate the remaining unmet need for disability services. The study will provide information for the negotiations for the next Commonwealth-State/Territory Disability Agreement. The study shows that on a 'snapshot day' in 2001 an additional 900 people were receiving accommodation support services, an additional 2,350 were receiving community support services and 2,425 additional people were receiving community access services. However, conservative estimates are that nationally 12,500 people still need accommodation and respite services, 8,200 places are needed in community access services, and 5,400 people need employment support. For copies of the report summary, visit the AIHW web site www.aihw.gov.au to read the media release and follow the link to the summary. OUR KIWI COUSINS Cloan Mackgill reports that there have been some significant developments in the Deafblind scene in New Zealand. The New Zealand Government came to the party last year with limited funding for services to people who are deafblind. This means that there are now six people receiving specific services. Still not enough but at least it is a good start. Deafblind NZ Inc. has passed new constitution which attempts to broaden the base of the Society while at the same time ensuring that people who are deafblind keep the overall control. At its last AGM a motion was passed to the effect that Deafblind NZ (Inc) take steps to become a member of the Australian Deafblind Council. Its members hope that New Zealand will gain the same status as the States of Australia and that possibly the ADBC could broaden its scope to also include the Pacific Island States." SOME CRITICALLY IMPORTANT DEAFBLINDNESS ISSUES (Di Hartman) Reading a recent issue of Blind Citizens News, I noticed that at the 2001Convention a resolution was passed by BCA members, supporting the Australian Deafblind Council [ADBC] in its fight to have 'Deafblindness 'recognised as a single condition by Federal and State Governments and Agencies. It occurred to me that whilst there was merit in one disability area supporting another, many of the members of BCA would know little, if anything, about deafblindness, or had in fact, never met a person who was deafblind. Just as the blind community has a division of those who are totally blind, and those who are vision impaired, the deafblind community also has two divisions. People who are profoundly deaf, who use Auslan for communication, and are legally blind consider themselves as 'deafblind' [db]. Auslan is the official language of the signing Deaf community in Australia. Those people who wear hearing aids or are hard of hearing and legally blind, usually describe themselves as 'vision hearing impaired' [VHI]. I am aware that there are people in the Blindness community who have a hearing loss, whether it be from an ageing process, genetic condition or from an accident, who may not relate to the term 'deafblind'. As blindness is often their primary sensory loss, these people tend to relate mostly to blindness issues and culture. It is when both conditions are almost equally debilitating that there is a need to understand why deafblindness should be seen as a separate disability in order for other people to fully understand the specific needs of this very isolated group of people. I have been involved with the deafblindness community for the past twelve years due to my own dual sensory loss. I have a limited knowledge of Auslan but have found that over a period of time, members of the deafblindness community have placed their trust in me, especially when I have advocated on their and my behalf for services and attitudes to be changed to accommodate our needs. Deafblind people are, for the most part, socially isolated due to the inability of hearing people to communicate with them. Many of the issues concerning deafblind people are similar to those experienced by blind and vision impaired people - for example, transport, education, accommodation, mobility, advocacy, employment and support. Imagine if one has a dual sensory loss, how much more complicated life can be. I have chosen to write about some of the more pressing issues for people who are deafblind. Transport People who are Deafblind and VHI are encouraged to travel independently and many do, although most need to have a guide. Travelling independently, as we all know, can be extremely frustrating when destination boards are impossible to read. It is even more difficult and frustrating, when one is unable to hear announcements or communicate with ease with the public, something that blind and vision impaired persons take for granted. Education It has been my experience that many people who are deafblind have been poorly educated. This, in conjunction with the fact that their language, Auslan, is a visual language without written form, means that many have difficulties with English literacy and have a limited vocabulary in English. This is not to say that the deafblind person is not intelligent, as I quickly realised when communicating with them in their first language, Auslan. Auslan does not rely on the spelling of English words. It uses signs to convey concepts and phrases. Most people who are deafblind do not have braille skills, although in recent years some people have been taught this method of communication. Without braille there is no other format available to them. If a person who is deafblind seeks to further their education, first they must check to see whether they can have the services of an interpreter before starting their course. Many an opportunity for further education is lost to the deafblind person because provision an interpreter has been denied due to lack of funding or lack of availability of an interpreter skilled and willing to work with a deafblind person. Only in recent years have the various agencies for sensory loss begun to understand the special need of those people who have a DUAL sensory loss. Only recently, with the advent of modern technology and individual classes teaching the internet and email, have deafblind people been able to break through the communication barrier between them and hearing people. Orientation and mobility Without mobility training, no blind or vision impaired person can feel safe when walking the streets or using public transport. I personally know of a deafblind person who went to a blindness agency about ten years ago and was given a cane but no mobility instruction due to the fact that no instructor could communicate with this person. Fortunately, this has now changed and most people who are deafblind have undergone mobility training, which has been the single most important factor so far for their ongoing fight for independence. There are now a number of mobility instructors (in Melbourne) who have Auslan skills. There has been a reluctance to use guide dogs with deafblind people although this has occurred overseas. It has been stated that deaf people do not talk, but I have yet to meet a deaf or deafblind person who is unable to make words that can be heard. It is hoped in the near future that this situation will change and deafblind people will have the benefit of more freedom of mobility with a trusted guide dog as their companion. Support Whenever people who are deafblind are asked what they most want, the answer is almost always 'to have on call someone who will be a guide/interpreter for any activity I wish to pursue'. In an ideal world, not only would there be people trained in Auslan, as well as guiding skills, but also possessing the ability to describe the surrounding environment. The deafblind person would be able to ring a central register and ask for 'a facilitator', at any time of the day, for whatever reason they require, be it for social, recreation or business. A few countries are known to have this service. The DeafBlind Association in Melbourne provides a community support service, though this is limited due to lack of funding and shortage of people trained in the skills previously mentioned. Most other states have little or no similar service provision for deafblind people. It is the dream of most deafblind people to have a facilitator of their own, a person they can trust and enjoy the type of activities they most like. Employment Very little can be said of the possibility for deafblind people to obtain full or part time employment. Most positions require a level of literacy skill which are not always evident with deafblind people. If most prospective employers baulk at employing a blind or vision impaired person, then the idea of employing a deafblind person is even further down the scale. Most people who are deafblind would cherish the opportunity to obtain employment, and therefore have the purchasing power to buy products that could enhance their lifestyle. Advocacy The ADBC is a reasonably new organisation and is just starting to speak on behalf of people who are deafblind. Unlike BCA, it has some agency staff on its committee and this is due to the fact that most deafblind people have poor literacy skills and limited knowledge of ways to lobby service providers and government bodies. It is my hope that in time, the ADBC will be recognised as a peak body, speaking for and as deafblind people on issues that are critically important to deafblind people. PAY BILLS ONLINE Australia Post has a new service online for paying most of your bills. The address is www.postbillpay.com.au. You can pay using your savings or cheque bank account or using your credit card. You can ask to have your bills electronically and you will be sent an email notification when a bill arrives but you have to contact your biller eg electricity company. Postbillpay has a demo screen so you can practice paying a bill first and learn about the service. ADBC WELCOMES THE WORLD FEDERATION OF THE DEAFBLIND (Mike Steer & Sharon Barrey Grassick) The World Federation of the Deafblind (WFDb) was born in Auckland, New Zealand at a meeting that followed the 7th Helen Keller World Conference. More than 300 people participated in the event: 114 people who are deaf-blind and 204 supporters. Participants came from 46 countries. Sweden sent 91 people to the conference and New Zealand as host had 62 people. Participants from the USA included 5 deaf-blind people and 10 interpreters/SSPs. The initial general assembly of WFDb commenced on Thursday, October 11, 2001 with discussion of the draft charter constitution. Nominations for representative membership of the Federation's managing council came from North America, South America, Europe, Africa, Asia, and the South Pacific. Election results for the following officers were as follows: President, Stig Ohlson of Sweden; Vice President, Daniel Alvarez Reyes of Spain; Secretary General, Lex Grandia of Denmark; Treasurer, Jeffrey S. Bohrman of the USA. The general assembly approved the following resolution for WFDb: "In line with all United Nations conventions on human rights, we, representatives of deafblind people of the world, united in Auckland at the Founding General Assembly of The World Federation of the Deafblind on October 12, 2001 urge all governments: * To recognize deafblindness as a unique disability. * To recognize all persons with deafblindness as persons with the right to full participation in all areas of society including education, information, communication, employment and political life. To ensure the quality of life and full participation of all persons with deafblindness, we urge all governments to provide the necessary services including special education, guide services, interpreter services, accessible information, accessible communication and accessibility in the entire environment." For more information contact wfdb@wfdb.org. WORLD FEDERATION: AUSTRALIAN REPORT (Sven Topp) Well it's nearly been a year since the inception of the WFDb at the joint Helen Keller Conference and WFDb General Assembly held in New Zealand. Since then the WFDb has been kept busy getting done the general paperwork associated with the setting up of any organisation. The logo has been officially decided upon and hence official letter heads have been made available to members of the Executive Council. If anyone wishes to see one then by all means, please ask me. To give you some idea it is essentially a picture of the world with WFDb written on it placed on a yellow background. WFDb has been registered and funding is being sought. Unfortunately getting funds is difficult as ADBC is aware and until some sort of funding arrives the WFDb still relies upon voluntary work. There will be an official email meeting later this year so if anyone wishes me to bring forward issues then please notify me of them and I will do my best to bring them to the Executive Council's attention. On the home front I have set up an email group for the Pacific region. It was originally aimed at being a group which would allow Australians and New Zealanders (and others later on who would join) to converse in an open forum and hopefully have a greater input into the goings on in the WFDb. Seeing that I have only had one person join this group to date it has been a little disappointing. However it still operates so if anyone would like to join then please give me your email address and I will join you up or send you an invitation. TERESA WAY AWARD The inaugural Teresa Way Award will be the major celebration during this year's Deafblind Awareness Week. The next training video, "We have contact!" will be dedicated to Teresa, and will be launched during the week, prior to the announcement of the winner of the Teresa Way Award. For those new to Beacon, Teresa was the Clerical Officer for WA Deafblind Association for many years, a position she loved. Teresa's sunny disposition, generosity and positive attitude to life affected everyone who knew her. She passed away in 2000 and is greatly missed by us all. The Teresa Way Award will honour her memory, and will go to someone who has made a contribution to the deafblind community New meeting arrangements The ADBC committee is now meeting over the Internet rather than by phone as it has done in the past. For the first time, all committee members now have email accounts, so meeting agendas and comments are circulated by email. This has a number of advantages. There is no longer the expense of interpreters and telephone links and committee members can reply in their own time. Bob Segrave is now back as part-time administration officer of ADBC. Bob's mobile phone number is 0427 435 243 and his email address is: segrave@connexus.net.au Mail should be sent to ADBC at PO Box 1213, Camberwell Vic 3124 ADBC Website More than 13,000 visits have been made to the ADBC Web site since it was set up in 1999.The site is at http://internex.net.au/~dba. If you have any suggestions about the site, please contact Bob Segrave. ADBC Committee agenda The ADBC Committee has applied for membership of the Australian Federation of Disability Organisations (AFDO). The federation is being set up by the Commonwealth Government to represent the interests of people with disabilities around Australia. Guidelines for the new meeting format have been agreed on and Di Hartman has expanded the deafblind email list so that subscribers will be able to discuss current issues of interest to ADBC. IMPORTANT PEOPLE Farewell to John Finch It was with much regret that ADBC said farewell, at its AGM to one of its founders, motivators and benefactors, John Finch, CEO of Victoria's DeafBlind Association. The unthinkable has happened. John, for so many years known to us as the wise, clear-thinking and always amicable Hercules of the deafblindness field in Australia has retired. ADBC members world-wide send him best wishes for a happy and healthy retirement and look forward to reading the history of deafblindness he is compiling. John recently wrote to Bob: I was deeply appreciative of the presentation made to me at ADBC's Annual General Meeting and for the comments that Irene made. I will remember my time on ADBC's Committee as something very special. Whilst I feel there is so much to achieve, I know as much as anyone that this is often done in little steps and it is only when one looks back that the achievements made can really be seen. Keep up the good work. My sincere thanks and best wishes Out and About NSW wonderwoman Trish James is back in circulation after another series of adjustments. Trish has for many years brought enormous energy, knowledge and experience as well as a sparkling personality to ADBC's on-going struggle for better quality service provision to Australians who are deafblind and we have missed her strong hand at the wheel. Trish's presence at the recent National Conference was one of its highlights for many admirers and well-wishers. COMING EVENTS Renwick College Communication Strategies for Students with Sensory & Multiple Disabilities September 30 - October 2 3-day Seminar Therese Rafalowski-Welch, M.Ed., University of Rochester. A national consultant in education of children with multiple disabilities and deafblindness. The course will help participants define communication in comprehensive terms and understand its basic and essential components. You will identify barriers to communication and which service providers inadvertently construct; recognise and respond to prelinguistic and unconventional communication. You will understand the sequence of earliest communication skills development and match levels to communication options. You will recognise behaviour--especially negative behaviours--as communication and the ways to provide students with other communicative options. You will develop strategies for increasing the communicative content of daily activities; You will adopt an ecological approach to communication assessment. You will view the student, the communication partner, and the environment; become familiar with formal and informal communication assessment tools--assessing the student, the communication partner, and the communication environment; support development of emergent literacy skills. Fee $300 Please rsvp to Colleen Smith or Christine Grimmer on tel/tty (02) 9872 0207/0302 fax (02) 9873 1614 email: colleen.smith@ridbc.org.au ADBC Contacts Western Australia Sharon Barrey Grassick sgrassick@senses.asn.au (ADBC Secretary) NSW Ms Irene McMinn irenemc@acay.com.au (ADBC President) Mike Steer rcms@cc.newcastle.edu.au (Beacon Editor) Sven Topp sventopp@ozemail.com.au (ADBC Vice-President) Carolyn Ferguson herger@optusnet.com.au (ADBC Parent Representative) Victoria Meryle Trentini m.trentini@dba.asn.au (ADBC Treasurer) Di Hartman dijon@alphalink.com.au ADBC Executive Officer Bob Segrave segrave@connexus.net.au About Beacon Beacon is edited by Mike Steer (RIDBC, NSW) and published by the Australian DeafBlind Council, PO Box 1213, Camberwell Vic 3124. Tel. 0427 435 243. Email: segrave@connexus.net.au Web: http://internex.net.au/~dba CALL FOR CONTRIBUTIONS Reports, original manuscripts and news items are sought for the next and subsequent issues of ADBC Beacon. The newsletter presents articles and reports on: A wide variety of issues and topics related to children, youth and adults in Australia and overseas who are deafblind It is intended that the newsletter will be a vehicle for informing interested persons, including Australians who are deafblind, researchers, educational administrators, Commonwealth and State personnel and service providers, as well as others in our communities about issues affecting people who are deafblind in Australia and overseas. Authors can submit reports or articles by email, in print or on disk for review at any time. Submissions should be sent to:Mike Steer Renwick College Royal Institute for Deaf and Blind Children Private Bag 29 Parramatta NSW 2124 email: rcms@cc.newcastle.edu.au Fax: 02 9873 1614 Page 2