DEAFBLIND ASSOCIATION (NSW) STATE REPORT ADBC Conference, 2000 Deafblind Association (NSW) has continued to work optimistically, although with some difficulty given the ongoing lack of funding by the NSW Government. 1998 saw the first committee elected under our newly incorporated Association constitution. The Constitution called for a 2 out of 3 majority of people who are deafblind to serve on the management committee. Despite many difficulties faced by the deafblind committee in their first year of action all agreed it had been a good learning experience. Strengths gained in 1998 were built upon in 1999, as more responsibility was taken by all members. 2000 sees a far more independent and competent executive for the committee. The aim is to ensure that the Association will be run by people who are deafblind for people who are deafblind. In both 1998 and 1999, New South Wales celebrated Deafblind Awareness Week. In 1998, we had our first annual dinner, launch of information booklets and sale of T-shirts. There were interviews on ABC Radio National's Program "Life Matters" on which Carleeta was interviewed about her life as a deafblind person and Trish James was interviewed about needs of people who are deafblind. Anne Arnold, the presenter, subsequently received a commendation at the "Human Rights Awards", for these interviews. In 1999 this was followed up with a very successful movie night showing videos of "The Journey", a film made by the ABC of our own Billy Sinclair's early life and his trip to Japan. Another video made by the BBC and Dr Oliver Sacks was also featured. This film was about Danny Delcambre and the community in New Orleans with a high incidence of Ushers Syndrome. It also shows the deafblind community in Seattle, and the services offered there. In 1999 there were also radio interviews, a barbecue and the annual Awareness Week dinner. Irene has taken Dotty, the signing doll, to schools and other groups to "talk" to children about people who are deafblind and the way they communicate. Dotty comes with her own communication folder and Braille book. The children (and adults) adore her. Accompanying all functions was a very successful Travelling Craft Show. The display featured work done by our talented members. The Deafblind Association has worked on Government committees and with other organisations to raise the profile of people who are deafblind and their particular needs. In NSW, an evaluation of the Disability Services Act was conducted by the Law Reform Commission, in 1998. DBA (NSW) participated with a submission and attendance at focus groups. A Legislative Assembly inquiry into 'Unmet Needs' has been initiated and a submission was prepared and sent by DBA. The Upper House conducted an inquiry into the issue and has tabled a report with 42 recommendations. The second part of inquiry is into unmet needs in the existing system. A submission was also prepared for a Research Grant from the Ageing and Disability Department NSW. DBA (NSW) received the letter in July 1999 advising that we had been offered the grant for research into identifying the number and location of people who are deafblind throughout the State. This work has been co-ordinated by DBA (NSW), and has been conducted by Mary Ward. She hopes to have the Report ready to send to the Ageing and Disability Department at the end of May. Mary has experienced many frustrations in the lack of responses to the questionnaire. Although it is known that quite a number of people who are deafblind are accommodated in group homes and institutions run by the NSW Department of Community Services, few questionnaires have been completed and returned to Mary from this Department. These deafblind Australians are being regarded as having an intellectual disability and their sensory disability support needs, in most cases, are unfortunately still being ignored. Irene McMinn, Stephen Hallinan, Trish James and Janne Bidenko formed a deputation to the Ageing and Disability Department's Funding Manager in June 1999, where they presented data and gave verbal evidence of the urgent need for funding for people who are deafblind. Ms Sharyn Campbell assured the deputation that funding for deafblindness would be addressed under their plans for Regionalisation, which would include low incidence disabilities. However, there was no indication of when this is likely to occur. Stephen Hallinan and Janne Bidenko subsequently attended two meetings to gather information on Regionalisation. In February 2000 an Expression of Interest submission was prepared. It outlines the way in which the needs of people who are deafblind would be met, under NSW DeafBlind Services, and was presented to ADD. There is no indication when funding will be available to begin the Regionalisation process, let alone funding for deafblindness, but we will continue to agitate! It is hoped that the results of Mary Ward's Research will be valuable in helping us achieve funding. During 1999, Janne Bidenko gave a paper at the "Human Rights, Disability and Education Conference". The paper was about the lack of education of the last generation of people who are deafblind. Irene McMinn and Trish James attend meetings and workshops for NSW Department of Health PADP (provision of aids for disabled people), in an attempt to have specific equipment provided. Equipment such as pagers, vibrating Braille alarm clocks, Braille writing equipment is not currently provided under this scheme. This equipment could make independent living a possibility for individuals who are deafblind. Stephen Hallinan participated in the research regarding the State Rail Authority, run by John Moxon, to assist them in writing their Action Plan, a requirement of the State Government. Trish James, Stephen Hallinan, John Lee and Janne Bidenko attended the Usher's Workshop at the Retina Australia Biennial Congress, held in Sydney in October 1999. We try not to miss an opportunity to advance the cause of people who are deafblind in this State and we are always gathering information to advantage our members. Hand Over Hand continues to provide interesting outings for our members the last Saturday of each month. The outings are augmented by 'Rainbow News'. During 1999 members enjoyed a weekend away in the Blue Mountains; rowing on the Nepean River, where the Olympic rowing will take place; a visit to Featherdale Farm where native animals, kookaburras, owls etc can be stroked; horseriding; a craft afternoon, where you would have found us making creatures from pipecleaners and nylon ribbon. Everyone had fun and on the same day enjoyed entertaining Stig Ohlson and his wife and interpreters. At the end of the day, no-one wants to go home from these outings and activities.